Wrestle with a Purpose | Pin Muscle Disease

Bethea, Brooks, Garnett, and others join DeMasi and MMF; look to "Pin Muscle Disease" this season

WRESTLERS ACROSS THE COUNTRY DEDICATE THEIR MATCHES TO THOSE WHO LOSE THEIR ABILITY TO WALK, TALK, SWALLOW, AND BREATHE

TRENTON, NJ - “It all started just eight years ago, when I was a senior at St. Marks High School in Wilmington, DE.  I laid on my back, in a hospital bed, unable to walk, unable to talk, unable to swallow, and unable to breathe, virtually paralyzed from head to toe.”

– Rob DeMasi, Founder and President of the Muscle Movement Foundation.

Imagine something as simple as breathing, something that we all take for granted, being as hard as pinning the heavyweight champion of the world.  Imagine being an elite athlete, a nationally recognized wrestling phenom, on your way to becoming a Division I collegiate wrestler, and the above happens, shattering all those hopes and dreams.  That was the world Rob DeMasi lived during his senior year in high school.  DeMasi was misdiagnosed numerous times, throughout high school, as doctors told him all of these symptoms were just in his head.  Because of DeMasi’s elite athleticism and strength it was harder for doctors to include muscle disease as a possibility for Rob.  It wasn’t until he laid in that hospital bed, his mother, Joyce, by his side, that his family doctor, who visited Rob, was able to tip the specialists to what she thought was ailing Rob.  

Operating with an undiagnosed form of muscle debilitating disease, Rob DeMasi was ranked honorable mention via USA Wrestling Magazine as a freshman and sophomore. Depicted, DeMasi was undefeated during his junior year, before enduring an injury, and less than one year later was finally properly diagnosed with myasthenia gravis (MG).

Operating with an undiagnosed form of muscle debilitating disease, Rob DeMasi was ranked honorable mention via USA Wrestling Magazine as a freshman and sophomore. Depicted, DeMasi was undefeated during his junior year, before enduring an injury, and less than one year later was finally properly diagnosed with myasthenia gravis (MG).

Myasthenia Gravis (MG) is a neuromuscular autoimmune disease that causes fluctuating weakness in the voluntary muscle groups, but can result in extreme muscular fatigue, weakness, and paralysis. Finally, DeMasi and his family had an answer to his, three and a half year, misdiagnosed nightmare and it was time to "Pin MG" like it was his opponent on the mat.

After undergoing surgery and receiving proper medication, at Johns Hopkins Hospital, DeMasi fought his way back to a respectable athletic level and suited up on the football field for a season at Delaware Valley University.  After accomplishing a childhood goal, playing a collegiate sport, DeMasi was forced, by the symptomatic return of the disease, to focus his attention back to a scary place in his life that molded him.

Rob DeMasi began the Muscle Movement Foundation with the idea of uniting the communities of athletics and fitness to fight neuromuscular disease. The message that DeMasi delivers to all the teams that support MMF is clear, use the gift of healthy muscles to compete at your highest level every time you take the field, mat, or court because some people do not have that wonderful opportunity. DeMasi has teamed up with high school and college athletic programs to support a local “Muscle Champion” in their fight to conquer their disease.  A “Muscle Champion” is defined by MMF, as an individual living and refusing to lose to muscle disease.  These Champions are highlighted at every sporting event of their partnered teams.

 

MMF has especially had a connection to wrestling.  This year will mark the 3rd consecutive season for the University of Maryland and Edinboro University programs in joining MMF’s cause for raising awareness and contributing to “Pin Muscle Disease.”  The two programs will also host a Muscle Movement Foundation “Pin Muscle Disease” match.  University of Buffalo, North Dakota State University, and George Mason University also plan to join the MMF, wrestling to “Pin Muscle Disease.” Two years ago, national powerhouse University of Iowa partnered with the MMF, specifically because of fellow St. Marks alumnus, Bobby Telford.  During that season, fellow Hawkeye wrestler, Sam Brooks, was introduced to Rob DeMasi and MMF.  Sam was coached in high school by Mike Powell, at Oak Park and River Forest High School.  OPRF wrestling team has joined MMF each of the past three seasons.  Coach Powell is a fellow “Muscle Champion” and was an All-American wrestler from the University of Indiana.  Because of these connections, Sam Brooks has decided to join as an official MMF advocate this season to help “Pin Muscle Disease". Sam will take a lead role, leading his University of Iowa Wrestling Team in a "Pin Muscle Disease" community service learning project with MMF this season. These prestigious wrestling teams continue to lay the foundation for “Pin Muscle Disease,” by inspiring youth, high school, and additional college teams to become involved.  Youth, club, high school, and college wrestlers will all be a crucial part in helping “Pin Muscle Disease” this upcoming season.

Official Muscle Movement Foundation Advocate and University of Iowa Senior, Sam Brooks! Photo credit: Mark Lundy - Lutte Lens, www.LutteLens.com

Official Muscle Movement Foundation Advocate and University of Iowa Senior, Sam Brooks! Photo credit: Mark Lundy - Lutte Lens, www.LutteLens.com

As you can see the Muscle Movement Foundation is very active in the wrestling community, and they have more good news to spread.  MMF’s most recent committed advocates are those that Founder and President, Rob DeMasi is really excited to have on board. Former Virginia Tech NCAA All-American, 3X ACC Champion, and current North Dakota State University Assistant Coach, Jarrod Garnett, has taken initiative in joining the MMF as an official advocate. Jarrod grew up wrestling with DeMasi and wanted to ensure he advances his NDSU wrestlers to the next level on the mat, and in life. Joining the MMF creates an avenue for Garnett to accomplish that, while taking a stand for DeMasi and over one million Americans.

Former University of Pennsylvania wrestling standout and current George Mason University Assistant Coach, Canaan Bethea, has also joined as an official advocate to help “Pin Muscle Disease.” Click the following link to listen to Bethea's message: Bethea's message. This past October Bethea, and co-founder Dr. Mark McLaughlin, invited, MMF Founder and President, Rob DeMasi, to their local youth wrestling camp, “Beat the Streets”, in Bethea's hometown of Trenton, NJ. Click the following link to listen to DeMasi deliver the MMF message at the Beat the Streets Kyle Snyder Wrestling Clinic: DeMasi's message.  The wrestling club is designed to teach underprivileged kids discipline and lifelong skills through the sport of wrestling, while developing their wrestling skills.  Beat the Streets Trenton’s goal was to introduce them to the sport that structured Bethea, DeMasi, and other contributors to the camp like NWCA & Intermat Wrestling Coach of the Year (2015), Tom Ryan, and 2016 Olympic Gold Medalist, Kyle Snyder.

(left to right): DeMasi and Bethea reunite in Bethea's hometown of Trenton, NJ. After learning of DeMasi's journey, Bethea has remained diligent in his efforts to help "Pin Muscle Disease"!

(left to right): DeMasi and Bethea reunite in Bethea's hometown of Trenton, NJ. After learning of DeMasi's journey, Bethea has remained diligent in his efforts to help "Pin Muscle Disease"!

Thanks to Canaan Bethea and Beat the Streets-Trenton, this wrestler walked away from the clinic with world class training and a "Pin Muscle Disease" t-shirt signed via Kyle Snyder.

Thanks to Canaan Bethea and Beat the Streets-Trenton, this wrestler walked away from the clinic with world class training and a "Pin Muscle Disease" t-shirt signed via Kyle Snyder.

DeMasi and Bethea once wrestled in a regional final match, in which DeMasi won, before Rob was diagnosed with Myasthenia Gravis.  The two reconnected this year and when Canaan heard about MMF, he was all in. Bethea was a standout at Penn qualifying for the NCAA National Championships three times.  Canaan Bethea has been working with the “Beat the Streets” wrestling camps for years and this most recent one was run by wrestling royalty, Kyle Snyder and Tom Ryan.  

What isn’t there to say about Kyle Snyder, he was 179-0 in high school, and over the past calendar year he’s become a Pan American champion, youngest American to win a World championship, won a NCAA title, and he won Gold in the Rio Olympics.  Accompanied by his collegiate coach at Ohio State, Tom Ryan, the youth of Trenton, NJ learned from some the best at this camp.

Prior to the start of Beat the Streets-Trenton wrestling clinic, Olympic Champion Kyle Snyder took the time to meet with Muscle Movement Foundation (MMF) Founder, Rob DeMasi, to learn how the MMF has created an avenue for wrestlers to "Pin Muscle Disease".

Prior to the start of Beat the Streets-Trenton wrestling clinic, Olympic Champion Kyle Snyder took the time to meet with Muscle Movement Foundation (MMF) Founder, Rob DeMasi, to learn how the MMF has created an avenue for wrestlers to "Pin Muscle Disease".

“This is very important to be out here in Trenton this weekend,” DeMasi told reporters at the camp, “I am taking a stand for over one million Americans that are fighting muscle debilitating diseases, and most importantly, if I can inspire any wrestler to embrace this opportunity to win on and off the wrestling mat, that is truly something special.”

If you are a coach, wrestler, or parent who would to begin your journey to help “Pin Muscle Disease”, click the following link: Wrestle with a Purpose to Pin Muscle Disease!

 

By: Pat Garyantes (pg.1313@yahoo.com)

© Muscle Movement Foundation | www.MuscleMovementFoundation.org

Delaware "Sack Muscle Disease" Game

Spartans and Vikings Unite in the Fight Against Muscle Disease; Dedicate Performance to Muscle Champions

SAINT MARK'S SPARTANS HOST "SACK MUSCLE DISEASE" GAME AGAINST SAINT ELIZABETH HIGH SCHOOL

WILMINGTON, DE - The Vikings of Saint Elizabeth High School and the Spartans of Saint Mark's High School have joined the Muscle Movement Foundation for the second consecutive season, playing with a purpose to "Sack Muscle Disease"! Both teams have welcomed local Muscle Champions - individuals living and refusing to lose to muscle disease, and have dedicated their game performances to their Muscle Champion's fight against muscle disease. Each season, the Spartans and the Vikings welcome their Muscle Champions as their honorary captains. Muscle Champions Mike Smith, Max French, and Mason Nellius have proudly walked, or rode, to the coin toss at every home game this season. 

Saint Elizabeth's Christopher Cropper and Mickey Henry with Muscle Champion, Max French

Saint Elizabeth's Christopher Cropper and Mickey Henry with Muscle Champion, Max French

Saint Mark's Austin Colmery with Muscle Champion, Mason Nellius, and brother Max

Saint Mark's Austin Colmery with Muscle Champion, Mason Nellius, and brother Max

Saint Elizabeth Head Football Coach Joe Aviola with Muscle Champion Mike Smith

Saint Elizabeth Head Football Coach Joe Aviola with Muscle Champion Mike Smith

Friday, November 4th, 2016, both teams met at Saint Mark's High School during a regular season game, and competed to be awarded the very first 2016 Delaware "Sack Muscle Disease" Game Trophy! The Saint Mark's Spartans and Saint Elizabeth Vikings carry a strong Catholic Conference rivalry, which creates a competitive environment. Despite this rivalry, the Spartans and Vikings have taken initiative to add a purpose to their rivalry; to "Sack Muscle Disease"!

The Saint Mark's Spartans proudly excepted the trophy from Muscle Movement Foundation President and Spartan Alumnus, Rob DeMasi, after defeating Saint Elizabeth  35-20.

DeMasi presenting Saint Mark's with trophy: 

https://www.youtube.com/watch?v=LfSrIOIbZno

 

Although the Spartans won the game, both teams were deemed Champions. They were crowned Champions by the over one million fathers, mothers, sons, and daughters in the United States, who are robbed of their muscular function. As the young men move their muscles to compete in a sport the love, win or lose, they leave it all on the field in honor of their Muscle Champions.

Saint Mark's High School's Muscle Champion, Mason Nellius, and father, Rich, during halftime at the 2016 Delaware "Sack Muscle Disease" Game

Saint Mark's High School's Muscle Champion, Mason Nellius, and father, Rich, during halftime at the 2016 Delaware "Sack Muscle Disease" Game

© Muscle Movement Foundation | www.MuscleMovementFoundation.org

Spartan-MMF Mixer | Tyler Fitzgerald's

Spartan - MMF Mixer to Take Place at Tyler Fitzgerald's

SPARTAN FAMILIES PLAN TO GATHER AT TYLER FITzGERALD'S TO ASSIST MUSCLE CHAMPION

WILMINGTON, DE - Supporters who are 21+, please feel free to join Coach Wilson, MMF Founder and Spartan Football Alumnus, Rob DeMasi, family, friends, and supporters at Tyler Fitzgerald's on Friday, November 4th, following the football game against Saint Elizabeth High School. The event will begin at 10:00p.m. and last until 1:00a.m. For just $30, enjoy two hours, 10p.m.-12a.m., with Spartan families and friends at an open bar! The final hour will consist of a cash bar. Delicious food will also be provided throughout the night! Please drink responsibly!

Tickets will be available for purchase from Rob DeMasi at each home game. Additionally, tickets may be purchased throughout the week. Call/ text Rob DeMasi at 302-893-9052. Checks payable to Muscle Movement Foundation. If you have any questions please feel free to email Themmo2012@gmail.com. We look forward to gaining your support!

RSVP on Facebook!: https://www.facebook.com/events/786824168125807/


Head Coach John Wilson and the Saint Mark's High School Football Team have joined the Muscle Movement Foundation for the second consecutive season; playing with a purpose to "Sack Muscle Disease"! The team is welcoming 10 year old "Muscle Champion", Mason Nellius, as the team's honorary captain at each home game this season. The Muscle Movement Foundation's "Muscle Champions" are individuals living and refusing to lose to muscle disease.

Reportedly, muscle disease affects over one million Americans. The diseases rob our loved ones of their ability to walk, talk, swallow, hug their loved ones, and breathe. The MMF unites the communities of athletics and fitness to provide accommodations to increase physical autonomy, financial stabilty, and emotional support for their families in need.

Mason Nellius is a 10 year old boy living and refusing to lose to Becker Muscular Dystrophy (BMD). BMD is one of nine forms of muscular dystrophy. It is a genetic disease that causes muscle degeneration and weakness throughout the body. The disease primarily affects the voluntary muscles. The disease is said to be a milder form of Duchenne Muscular Dystrophy, which allows the voluntary muscles to function better than they do in Duchenne. Unfortunately, Mason's parents still carry suspicion that Mason's disease may be Duchenne. Mason has degenerated quicker than normal. At just 8 years of age, Mason lost his ability to walk and bear weight. He endures extreme weakness in his core and hands. He can sit unassisted, but cannot get into a sitting position without assistance. His mother (Evelyn), and father (Rich), desperate to help their son, attempted the doctor's recommendation of steroid treatment. The treatment was discontinued after the treatment displayed no benefit. Despite this reality, Mason relentlessly participates in physical therapy, occupational therapy, and speech therapy, as he enjoys life. Mason loves his brother, his dog Daphne, family, and friends. He likes animals and enjoys the outdoors. Mason also plays baseball in the Challenger League, and is a boy scout! He is very excited to meet the Spartan family for the rest of this season!

As the Champions of the Spartan football team move their muscles to compete in a sport they love, in honor of Mason Nellius, and Muscle Champions across the country, you too can contribute to the team's involvement! All contributions from this event will be directed to assist Mason with physical, financial, and/or emotional accommodations to provide him the love, hope, and support every ten year old boy deserves!

© Muscle Movement Foundation | www.MuscleMovementFoundation.org

Buffalo State | Sack Muscle Disease

Ryan Mutterer and Bengals Join Muscle Movement Foundation; Plan to Sack Muscle Disease

MUSCLE CHAMPION, MATTHEW MURRAY, JOINS BUFFALO STATE FOOTBALL TEAM AS HONORARY CAPTAIN/COACH

BUFFALO, NY- The Muscle Movement Foundation (MMF) is pleased to welcome the Buffalo State College Football Team to Team Muscle Up! The champions of Buffalo State's Football Team are uniting for the MMF's "Muscle Champions" - individuals who are living and refusing to lose to muscle disease. Bringing a team effort to the MMF’s fight, the Bengals plan to play with a purpose to "Sack Muscle Disease" on 10/29/16 at 11:15 a.m. against Hartwick College. The Muscle Movement Foundation is thrilled to deliver the MMF message to the Bengals athletes and have the opportunity to raise essential awareness in the city of Buffalo; and credit goes to one specific Bengal.

The Muscle Movement Foundation has welcomed a special individual, a Bengal football player, to the list of Team Muscle Up Advocates. Team Muscle Up Advocates are individuals who are not affected by neuromuscular disease, yet have been inspired by the strength of the MMF's Muscle Champions - individuals living and refusing to lose to muscle disease. Buffalo State's Ryan Mutterer has taken initiative in joining the MMF and has inspired his fellow teammates and coaches to unite in the fight against muscle disease. Mutterer, a junior on the Buffalo State Football Team, is an essential component to the team. Positioned as the team's kicker/punter, Ryan ensures the Bengals capitalize on every possible opportunity to score points, and provides the best opportunity for the Bengals defense to earn a turnover. A strong and accurate leg is just one piece of Mutterer's ability to lead the team. Mutterer, now an upperclassman, works to lead his team on and off of the field. Portraying excellence in the classroom, in the community, and on the playing field is important to Ryan. He encourages his teammates to do the same, while he looks forward to the potential opportunity in earning the title of team captain in 2017.

Buffalo State's Ryan Mutterer practicing his field goal attempts.

Buffalo State's Ryan Mutterer practicing his field goal attempts.

After learning about the Muscle Movement Foundation, Ryan capitalized on the special opportunity the Muscle Movement Foundation provides across the country. Ryan learned of the Muscle Movement Foundation through a friend, a special individual, Matthew Murray. Matthew Murray, a phenomenal athlete, is living with a form of muscle disease. One year ago, Matthew and Matthew's sister, Colleen, established a strong relationship with Mr. Rob DeMasi, the founder and president of the Muscle Movement Foundation. DeMasi, greatly inspired by Matthew's perseverance and accolades, promised the Murray's he would help them raise significant awareness in their local city of Buffalo. Matthew and Colleen connected Ryan Mutterer to DeMasi, where Mutterer was thrilled to learn the Muscle Movement Foundation advocates for a cause dear to his heart and provides a way he can make a difference for Matthew by way of a sport he loves - football. The foundation was set!

Ryan Mutterer, the Buffalo State Football Team, and MMF Founder and President, Rob DeMasi, are thrilled to welcome a very strong asset to the Bengals Team. Muscle Movement Foundation "Muscle Champion" and honorary captain/coach for the Buffalo State Bengals Football Team is Matthew Murray!!

Matthew Murray is from Buffalo, NY and was born on 1/30/93. After his parents were alarmed by often falls, Matthew was diagnosed at the age of three with Duchenne Muscular Dystrophy (DMD). DMD is a genetic disease that causes progressive muscle degeneration and weakness throughout the body. It is 100% fatal, and unfortunately has no cure. At a young age Matt tried every sport, but particularly enjoyed baseball with his twin brother, Daniel, and his Dad as his coach. Unfortunately, this only lasted for a short period. At 10 years old, the disease progressed causing it to be too difficult for Matthew to participate any longer. Matt's mother immediately began to look into a sport for him to play, and found sled hockey! Matt instantly fell in love with the sport. Interestingly, the sport had a bigger impact on Matt than simply providing the satisfaction of winning a trophy. Matt was around other kids with disabilities and was a member of a team, which had a tremendous impact on his social development and helped him embrace his "disability". 

Muscle Movement Foundation Muscle Champion and Buffalo State College Football Team's Honorary Captain/Coach, Matthew Murray

Muscle Movement Foundation Muscle Champion and Buffalo State College Football Team's Honorary Captain/Coach, Matthew Murray

Around the same time Matthew discovered his love for sled hockey, he lost his ability to walk and began to use a power wheelchair to maintain autonomy. After transitioning to a power wheelchair, Matt started high school at St. Joes, where teachers would often notice students riding on the back of Matt's chair down the hall. Matthew's friends helped him enjoy high school to the fullest, creating life lasting memories. Matthew conquered high school and began a new journey into college, enrolling at the University of Buffalo. University of Buffalo was a bigger school with new surroundings, but to no surprise, Matthew quickly persevered and adapted to the new challenges. At UB, he continued competing in sled hockey, while he pursued a degree in Communications. Continuing his career, the day finally arrived; a day Matthew will always remember. Matthew played his very last sled hockey game and retired from competing in the sport. On this day, his team won a national championship! 13 years of sled hockey competition and winning his 3rd National Championship of his career, Matthew finally retired. After retiring, Matthew went on a plane for the first time being in a chair, and proudly received the 2015 USA Hockey Disabled Athlete of the Year Award, a tremendous accolade!

Matthew graduated from UB in September of 2015. After reflecting on his journey, Matt began to realize how powerful the support from his family and friends was in helping him successfully fight muscular dystrophy. The support inspired Matt to provide the same assistance to others fighting his disease, who may lack adequate support in the home. The summer after Matt's college graduation, Miles For Matty, Inc was formed. In the beginning stages of Miles for Matty, Inc. everyone naturally wanted to assist Matt in his fight, so Matt crossed a few things off his bucket list. He traveled to London to see his favorite soccer team play Arsenal, visited his brother at school, and went to a Buffalo Bills game. Despite the barriers presented in living with muscular dystrophy, Matthew successfully crossed these items off of his bucket list and began helping others do the same!

"Matt's goal has always been to help others and he is doing just that. The first person Miles for Matty, Inc. successfully assisted was a boy named Nate Gavin. We helped Nate meet his favorite Buffalo Sabres player, Tyler Ennis, after a game. Matt's goal is to help as many individuals with Duchenne cross items off their bucket list."

-Colleen Murray (Matthew's sister)

Matt and sister, Colleen, have teamed up with three of their friends, Vincent, Eric, and Tyler, and continue their newest journey operating Miles for Matty, Inc., which was formed in July 2015. The organization aims to positively impact the lives of individuals living with Muscular Dystrophy and more specifically, spread awareness about Duchenne Muscular Dystrophy. They do so by sharing Matty's inspiring story, continuing his bucket list journey, and by helping other individuals living with Muscular Dystrophy cross items off their bucket list too. They believe in the concept that no matter what barrier one may be presented with, limitless minds, passion and persistence will allow them to help turn countless dreams into realities.

The Muscle Movement Foundation is pleased to welcome Matthew Murray and Miles for Matty, Inc. to our team. Together, they will continue to turn dreams into a reality!

The Muscle Movement Foundation is an IRS-registered 501(c)3 organization. Donations are recognized as tax exempt. To make a contribution of any size, visit www.musclemovementfoundation.org. ID #46-0554622

© Muscle Movement Foundation | www.MuscleMovementFoundation.org

St. Elizabeth Football | Sack Muscle Disease

Vikings Sack Muscle Disease for Second Consecutive Season

ST. ELIZABETH VIKINGS CONTINUE TO DEDICATE THEIR GAME TO THE MUSCLE MOVEMENT FOUNDATION'S MUSCLE CHAMPIONS

WILMINGTON, DE - Team unity is a trademark quality of the maroon and gold Saint Elizabeth Vikings. According to the Merriam-Webster Dictionary, unity is "a condition of harmony; the quality or state of being made one; a continuity without deviation or change." The Vikings' unity is exceptionally noticeable to the public eye, but their commendable characteristic runs deeper than the colors they proudly wear on their back. In fact, the Vikings Football Team has united the school, leading a special community service learning project each fall. The project is operated by Offensive Coordinator, Joe Wright, and passed to the student-athletes on the football team. The Viking football players take the cause into school and inspire their fellow classmates to join their cause, which they impressively accomplished last year. The assistance from Athletic Director, Joe Papili, and Head Coach, Joe Aviola, has helped the players successfully unite the students of Saint Elizabeth High School during the 2015-2016 school year, and the team plans to set a new goal for the end of this year!

The student-athletes of the Saint Elizabeth Football Team have continued to display a special bond that unifies them with class and character. The way the team has carried themselves is to no surprise, considering their coaches. Lead by an accredited coaching staff in Mr. Joe Papili (Athletic Director), Joe Aviola (Head Coach), Joe Wright (Offensive Coordinator), Mark Vankerhoven, Jim Petruccelli, James Ashton, Matt Janicki, John Hendrick, and Tim Butler, the team is mentored by individuals who have excelled in the game of football and have established themselves as strong role models in society. The coaches emphasize team unity and character as the team competes week to week. Offensive Coordinator, Joe Wright, gathered the team after a hot summer practice this past summer.

"Gentlemen, we will continue to win each day. Our goal is to win each day this year, week to week. We will unite, and continue to portray excellence and integrity, as we represent as Saint Elizabeth Vikings. We will unite together, and push each other to get better on and off this football field this season."

Offensive Coordinator, Joe Wright, speaking to the team during a summer practice.

Offensive Coordinator, Joe Wright, speaking to the team during a summer practice.

Uniting to win, on and off the football field, is exactly what the Vikings have planned for themselves, and for the school, this fall. The team has joined the Muscle Movement Foundation for the second consecutive year; playing with a purpose to "Sack Muscle Disease". Last season the team started their community service learning project by welcoming several "Muscle Champions" at their home field at Baynard Stadium. "Muscle Champions" are individuals affected by muscle debilitating disease, yet define the odds in living with their disease and live life to the fullest. The football team welcomed their "Muscle Champions" at every home game, where they honored their fight against muscle disease. The captains of the team proudly walked, and pushed their "Muscle Champions" to the center of the field for the coin toss. Notably, when the clock hit 0:00 in the fourth quarter of each game, the Vikings' would embrace their "Muscle Champion", dedicating their game to his/her fight. Week to week the Vikings' would send a special message to their Muscle Champions, as they increased the school's involvement. By the end of the school year, the players inspired the cheerleaders, Vikings' community, and students to raise awareness for their Muscle Champions by wearing custom Saint Elizabeth "Sack Muscle Disease" shirts. Additionally, the team increased the school's involvement by inspiring a Viking Fundraiser during Spirit Week. Thanks to the 2015-2016 team, the Muscle Movement Foundation provided essential accommodations to their Muscle Champions, which helped them maintain physical autonomy, financial stability, and gain emotional support!

"I am so proud to be the Muscle Movement Foundation Player of the Week. I want all Muscle Champions to know we (Vikings) will keep fighting, so you keep fighting too."

-Viking Running Back, Christopher Cropper

This 2016-2017 school year, the Vikings are pleased to welcome two Muscle Champions to their team. Muscle Champions, Mike Smith and Max French, will join the Vikings all season long. The team plans to honor Mike Smith as their honorary coach, and Max French, as their honorary captain!

Michael Smith is currently a 20 year old student at Wilmington University. After juggling the decision to major in sports management or video game design, he has settled into classes in his degree program for video design. Michael has a strong passion for athletics, more specifically football. His favorite NFL Team is the Dallas Cowboys, which he has no problem representing in the prominent Philadelphia Eagles territory of Wilmington, DE! Although he loves the game, he unfortunately has never been able to compete. Michael did not begin to walk until 22 months old. His parents considered Michael to simply be a "late- walker" but their suspicion increased after Michael displayed additional symptoms.

In May of 2001, at just 5 years old, Michael was diagnosed with Duchenne Muscular Dystrophy (DMD). Duchenne Muscular Dystrophy is one of nine forms of muscular dystrophy categorized as a genetic disease that causes muscle degeneration and weakness throughout the body. It is 100% fatal. Just six years after being diagnosed, Michael experienced the debilitating effects of muscular dystrophy and lost his ability to walk. At just 11 years old Michael successfully completed the transfer to a power wheelchair, in order to maintain physical autonomy. Resilient, Michael is not defined by his disease and lives life just as "normal" as any other 20 year old. He wanted to take initiative in helping others overcome the difficulties in living with muscle damaging disease, and inspire others along the way. His motto:

"There is no dis- in my ability!"

-DMD Muscle Champion, Michael Smith

(left to right): Athletic Director Joe Papili, Muscle Champion Mike Smith, and Offensive Coordinator Joe Wright after a win against Saint Mark's High School last season.

(left to right): Athletic Director Joe Papili, Muscle Champion Mike Smith, and Offensive Coordinator Joe Wright after a win against Saint Mark's High School last season.

Max French recently turned 11 years old! Growing up, he was a typical kid. He was in scouts and played baseball, but his family noticed he tired quickly and experienced trouble in the heat. Additionally, Max began to show difficulty with strength and coordination in his hands. Two years ago, in the third grade, Max had a teacher who informed his family that Max would not be able to do middle school, high school, or college work, nor work at a job. Max is a very smart child and was placed in a gifted reading group that same fall. Hearing that statement from his teacher confused and worried his family. The same teacher showed his family Max's writing samples and they noticed that his penmanship and ability to write for longer periods of time, had severely diminished.

"My heart dropped when I saw how his writing had changed from the previous year."

-Maggie French, Max's mother

The family immediately told the teacher they felt the need to see a doctor. Max was immediately scheduled for a neurological evaluation. A few weeks later, the family pulled Max out of school to homeschool him. He began learning at home, while the family waited three long months to see the neurologist. Nonetheless, Max flourished at homeschool! He was able to work on his own without distractions. He completed his work in the mornings and used the afternoons for therapy, doctor appointments, field trips, and library trips. After nine months of testing, including a muscle biopsy, two MRI's, and an EMG, it was determined that Max had Congenital Fiber Disproportion Myopathy.  His muscles began to turn to fat. Two genetic tests, and eight months later, (just this past summer) the family discovered that Max has RYR1 Myopathy. Reportedly, this disease causes exercise intolerance, heat intolerance, progressive muscle weakness, hip contractures, and mild to severe lung problems.  

Despite, these difficulties, Max has attended summer camp, went to a dance with a date, rode in a Harley side car, and continues to travel and advocate for his fellow Muscle Champions. He and family are looking forward to meeting the Vikings' community tomorrow, 9/23/2016, at the football team's home game against the Conrad School of Science. Please feel free to stop at the Muscle Movement Foundation booth, located under the scoreboard at Baynard Stadium, to meet Max and family!

This season marks the second year the Saint Elizabeth High School Football Team has joined the MMF's fight against muscle disease. Another memorable year is underway! During this time, the Muscle Movement Foundation would like to announce a warm welcome to Offensive Coordinator, Joe Wright, who increased his involvement with the MMF this season. Joe Wright is now an official MMF - Team Muscle Up Advocate! Here are some of Joe Wright's commendable statistics and inspiration in joining the Muscle Movement Foundation!


1.) Head Coach - One Hundred Percent Football – Wilmington, DE (www.ohpathletics.com):

-Founder.
-Private training for offensive skill positions.
-Private speed/agility/strength training.
-Football Camps for 3rd-8th graders.
-Started in 2010.

2.) Coaching Experience:

St. Elizabeth’s High School – Wilmington, DE
-Offensive Coordinator / QB Coach (2014 - Present).

Avon Grove High School – West Grove, PA:
-Offensive Coordinator / QB Coach (2012-2013).

West Chester University - West Chester, PA:
-Volunteer Quarterbacks Coach (Spring Camp 2009 and Fall Camp 2010).

3.) Playing Experience:

St. Mark’s High School:
-Gatorade Player of the Year 2003.
-Offensive Player of the Year 2003.
-Michael DeLucia Sportsmanship Award 2003.
-2x All-State QB (2002, 2003).

West Chester University:
-Team Captain 2009.
-Offensive Player of the Year 2009.
-2x All-Conference (2008,2009).
-Harlon Hill Trophy Watch List.

Joe Wright is extended family to MMF Founder/CEO, Rob DeMasi! Joe and Rob grew up playing for the same grade school and high school team. Joe, several years older than Rob, was a role model for Rob growing up. Since Joe continued his career at West Chester University, Rob was highly interested in attending school and playing football for the Golden Rams. Just a sophomore in high school, the running back coach visited Rob in school to discuss the benefits of attending WCU. Unfortunately, the thought of playing for the Golden Rams remained as such. Two years later Rob was diagnosed with myasthenia gravis (MG) and interest from colleges vanished. Joe Wright has supported Rob at a young age in all his endeavors, and it was important for him to support Rob in his new position - the Founder of the Muscle Movement Foundation! Thank you Mr. Wright for taking a stand for the over one million fathers, mothers, sons, and daughters who are unwillingly robbed of their ability to move.

"We, as a staff, try to instill discipline and hard work into these young men, which they are going to need not only in football, but in life. We challenge them to become better student athletes and young men, hoping to set the foundation they are going to need in their future endeavors. They have embraced the Muscle Movement Foundation and its values to help others achieve their potential and reach their goals, which many of us take for granted." -Coach Joe Wright

"Having a cause to dedicate the season to, instills values within these young student athletes that what we come together for is bigger than football. I could not think of a better cause for our athletes to embrace, than one relatable as the Muscle Movement Foundation." -Coach Mark Vankerhoven

© Muscle Movement Foundation | www.MuscleMovementFoundation.org

Tatnall Football | Sack Muscle Disease

Tatnall Football Team Joins MMF; Playing with a Purpose to Sack Muscle Disease!

TATNALL FOOTBALL TEAM JOINS FELLOW HORNET AND MMF ADVOCATE JUSTIN PERILLO

WILMINGTON, DE - Head Football Coach Jody Russell and the Tatnall School Football Team has joined the Muscle Movement Foundation (MMF) in the fight against muscle damaging disease. The Hornets are playing with a purpose to "Sack Muscle Disease" this fall! Head Coach Jody Russell and team were inspired to join Team Muscle Up - the MMF's team made of athletes that dedicate their game to individuals affected by muscle disease - after learning of Tatnall Football Alumnus, Justin Perillo's involvement with the MMF. Last football season Justin Perillo joined the MMF as an official Team Muscle Up - MMF Advocate. Since, he has served on patient home visits and continues to raise awareness for "Muscle Champions" across the country.

Justin Perillo surprised Marci Williamson at a patient home visit last season. Marci was just weeks out of the hospital after recovering from a Myasthenia Gravis (MG) Crisis. A myasthenia gravis crisis is when one's diaphragm muscles become too weak for the patient to breathe on their own. Justin delivered a signed Green Bay Packers shirt to Marci to lift her spirits. Marci wears it every football season!

Justin Perillo surprised Marci Williamson at a patient home visit last season. Marci was just weeks out of the hospital after recovering from a Myasthenia Gravis (MG) Crisis. A myasthenia gravis crisis is when one's diaphragm muscles become too weak for the patient to breathe on their own. Justin delivered a signed Green Bay Packers shirt to Marci to lift her spirits. Marci wears it every football season!

Coach Jody Russell and coaches invited MMF Founder, Rob DeMasi, to share the MMF-message with his team. DeMasi delivered the MMF-message, stressing the importance of opportunity. He spoke about the opportunity he was privileged with; having the ability to move his muscles to participate in athletics for over fourteen years. DeMasi touched on playing football with Justin Perillo at Saint John the Beloved and being coached by phenomenal coaches, such as, Coach Jody Russell during youth football camps. Embracing his opportunity set the foundation for DeMasi to choose his high school and have a memorable career; despite battling an undiagnosed form of muscle disease from freshman to senior year at Saint Mark's High School. After being properly diagnosed during his senior year with myasthenia gravis, an autoimmune form of muscle disease, DeMasi saw an opportunity to turn his own personal misfortune into a platform to help individuals living with similar diseases. DeMasi inspired the players to embrace life.

"Embrace this opportunity! Embrace the opportunity of being apart of an accredited high school community, learning from one of the best coaching staffs in the state, having a family that loves you, and most importantly, having a clean slate of health - having the ability to move your muscles at will, to compete in a sport you love!"

After the MMF-message was delivered, each player and coach was excited to begin the 2016 season; dedicating their game to their "Muscle Champion"! Coach Russell and the Hornets are excited to welcome their 2016 "Muscle Champion" and honorary captain, Eddie Hazeldine! Eddie is a fourteen year old boy who is living and refusing to lose to Duchenne Muscular Dystrophy (DMD). DMD is one of nine forms of muscular dystrophy, which causes muscle degeneration and weakness throughout the body. It is 100% fatal. Unfortunately, the effects of the disease have progressed and Eddie has recently lost his ability to walk. He is currently transferring to a power wheelchair to maintain physical autonomy. In efforts to improve his quality of life, the Muscle Movement Foundation has provided Eddie with a wheelchair accessible automobile. The MMF hopes to provide Eddie with a wheelchair accessible ramp, so Eddie can safely maneuver from his home to his vehicle and back. Despite his circumstances, Eddie continues to wake up each day with a smile on his face and a heart full of love. He has joined numerous teams across the state, in efforts to represent for his fellow "Muscle Champions" - over one million fathers, mothers, sons, and daughters affected by muscle disease across the country. He is excited to meet the Tatnall community this season!

The Hornets will welcome Eddie and family at their first home game this Saturday, September 24th at 12:00 p.m, against Archmere Academy. Coach Russell and the Hornets will welcome Eddie as their Muscle Champion and honorary captain at every home game this season!

Special thanks to Head Coach Jody Russell and former Tatnall football star, Justin Perillo, for taking initiative in joining the Muscle Movement Foundation and the fight against muscle damaging disease!

© Muscle Movement Foundation | www.MuscleMovementFoundation.org

Wesley Football | Sack Muscle Disease

Wolverines Join Muscle Movement Foundation for Second Consecutive Season

THE WOLVERINES DEDICATE HOME GAME IN HONOR OF MUSCLE CHAMPIONS ON 9/10/2016  AT DRASS FIELD

DOVER, DE - Head Coach Mike Drass, and the Wesley College Wolverines undoubtedly play with a purpose. The team's remarkable statistics and national ranking each year speaks for itself. To put the team's success into perspective, the Wolverines have made the DIII National Playoffs for eleven straight years. Of those eleven years, the Wolverines have made the national semi-finals six times! Much of the team's success is credited to Coach Drass. Since Drass took over the reins of the Wesley football program in 1993, the Wolverines have only accumulated winning seasons. He has been deemed one of the winningest coaches in Division III history, and also serves as the school's Director of Athletics!

Drass is accompanied by Associate Head Coaches, Chip Knapp and Steve Azzanesi, who instill the champion mindset into their student-athletes. Winning, a common attribute of the Wesley football program, is the result of months of planning and preparation. Successfully completing months of strength and conditioning drills, and hours of play review and repetitions, the Wolverines are ready to win come the start of the season. Acknowledging the importance of "team effort", Drass and coaches decided to take initiative in using their success to join another team this 2016 season.

The Wesley College Football Team joined the Muscle Movement Foundation for the second consecutive season; playing with a purpose to "Sack Muscle Disease"! After learning about the Muscle Movement Foundation, and the individualized experience the MMF creates for their "Muscle Champions", Coach Drass and the Wolverines took initiative in bringing a team effort to the fight against neuromuscular disease. On Thursday, September 8th, Coach Drass invited MMF Founder, Rob DeMasi, to speak at practice. DeMasi shared his inspiring muscle disease survivor story, and importance of the Muscle Movement Foundation with the team, which was followed by a message about the importance of "effort" in life. Concluding Thursday's practice, the players were excited to take the field in efforts to record a win in honor of their "Muscle Champion".

Head Coach Mike Drass and Muscle Movement Foundation Founder, Rob DeMasi. Copyright 2016, Wesley College Athletics.

Head Coach Mike Drass and Muscle Movement Foundation Founder, Rob DeMasi. Copyright 2016, Wesley College Athletics.

MMF Founder, Rob DeMasi, speaking to a group of players at Thursday's practice. Copyright 2016, Wesley College Athletics.

MMF Founder, Rob DeMasi, speaking to a group of players at Thursday's practice. Copyright 2016, Wesley College Athletics.

Wesley Coach Bernie Nowakowski and the MMF's, Rob DeMasi, huddling the team. Copyright 2016, Wesley College Athletics.

Wesley Coach Bernie Nowakowski and the MMF's, Rob DeMasi, huddling the team. Copyright 2016, Wesley College Athletics.

Saturday, September 10, 2016, Wesley College President, Robert E. Clark II, Coach Drass, and the Wolverines welcomed DMD Muscle Champion, Eddie Hazeldine, for the second consecutive year as the team's honorary captain! Eddie served as the Wolverine's "Muscle Champion" in 2015 after Drass and team learned of his story. The team specifically requested for Eddie to be their honorary captain once again at Drass Field at Scott D. Miller Stadium.

Eddie Hazeldine is a DMD Muscle Champion- a 14 year old boy living and refusing to lose to duchenne muscular dystrophy (DMD). DMD is a genetic disease that causes progressive muscle degeneration and weakness throughout the body. It is 100% fatal, and often causes the affected individual to lose their ability to walk between 7-13 years of age. As Eddie celebrates a birthday each year, it is a bitter sweet feeling for his family. Each year, Eddie has grown weaker and weaker. In the beginning of the 2015 football season, Eddie could successfully walk from the sideline to the center of a football field. Come Wesley's final 2015 regular season game, Eddie failed to do so. Wesley's 2015 Captain and current Quarterback for the Green Bay Packers, Joe Callahan, assisted Eddie to the coin toss last season. Eddie was able to walk from the sideline to the field's yard marker, and transferred to his wheelchair to be pushed by Mr. Callahan the rest of the way. This year Eddie has completely lost his ability to stand and walk, and relies on a wheelchair to operate. Starting Junior Linebacker, Samer Manna, proudly took over for Callahan this year, pushing Eddie to the 50 yard line with the rest of the team's captains. Although Eddie is affected by the weakness caused by DMD, his mentality remains strong and his effort - relentless.

Photo courtesy of Wesley College Athletics. Copyright 2016, Wesley College Athletics

Photo courtesy of Wesley College Athletics. Copyright 2016, Wesley College Athletics

DMD Muscle Champion, Eddie Hazeldine, and the Wesley Football Captains shake hands with Frostburg State to begin the coin toss. Photo courtesy of Wesley College Athletics. Copyright 2016, Wesley College Athletics

DMD Muscle Champion, Eddie Hazeldine, and the Wesley Football Captains shake hands with Frostburg State to begin the coin toss. Photo courtesy of Wesley College Athletics. Copyright 2016, Wesley College Athletics

Eddie, representing for his fellow "Muscle Champions" - over one million Americans affected by neuromuscular disease, smiled ear to ear sitting with the Wesley Wolverines. After every Wesley Wolverine football player stood proudly during the National Anthem, Wesley College honored another special individual. Wesley College honored the life of DMD Muscle Champion, Marc Gonzalez, who passed away from the effects of DMD this past summer. Marc was a fifteen year old boy with a strong passion for football, more specifically J.J. Watt and the Houston Texans. Despite living with extreme weakness in his hands, Marc relentlessly created a masterpiece of J.J. Watt, which was created with charcoal and chalk. The Muscle Movement Foundation immediately joined his family's efforts in raising awareness to help Marc meet his idol. Marc Gonzalez and mother, Vicky, were invited to the Houston Texans training camp where Marc met his idol face-to-face. Vicky and Marc presented J.J. Watt with custom Muscle Movement Foundation "Sack Muscle Disease" training gear to proudly represent for Marc throughout the season. J.J. Watt granted Marc's wish, but Marc's highlight of the day was when Watt signed Marc's portrait! When asked why Marc idolized J.J. Watt, his proud response:

"His strength and courage."

Marc refused to lose to Duchenne Muscular Dystrophy with that very same strength and courage, not letting the disease define him. MMF Founder, Rob DeMasi, promised Marc's family that the Muscle Movement Foundation would carry the legacy of Marc into every football season. The Wolverines were proud to hold a moment of silence in honor of the strong and courageous, Marc Gonzalez.

Photo credit: Shannon Baty, KHOU 11 News

Photo credit: Shannon Baty, KHOU 11 News

The Wesley Wolverines concluded the game with a stellar performance, claiming victory over Frostburg State, 43-7! Coach Drass and the team proudly dedicated their team win to Eddie Hazeldine! Several players on the Wesley College Football Team stayed after the game to congratulate Eddie on his win and share their thoughts about the Muscle Movement Foundation. One of those players happened to be former Wesley All-American Guard, current coach, and the Muscle Movement Foundation's newest advocate, Devin Filliben! Last season, Filliben took initiative in joining the MMF and informed Coach Drass about the positive impact the MMF has made in his local community of Northern Delaware. Filliben, now a coach, transitioned to another lead role for the Wolverines and wanted to continue to incorporate the MMF's motivational message with his team.

"Having the opportunity to work with the Muscle Movement Foundation last season was inspiring. Seeing a young man, at just 13 years of age, struggle to simply walk, was hard for me. After hearing Rob DeMasi educate the team about Eddie's disease, it was clear to me how much of a champion Eddie is. Everyday being able to adapt, overcome, and persevere, despite his obstacles, is something I think we all need to learn to do, consistently. It motivated me to embrace my opportunity and privilege of being a collegiate athlete, and it was important for me as a coach to instill this important message into our young athletes."

-Devin Filliben

In addition to Filliben (A.I. du Pont High School), Delaware natives Alex Kemp (Caesar Rodney High School), Jamai Rice (Saint Mark's High School), and Mike Sabino (Lake Forest High School) stayed after the game and explained how special it was to work with DeMasi -also a Delaware native (Saint Mark's High School) - and the MMF, in order to help an individual in need from their home state. After the players said their goodbyes and the team made their way to the locker room, one coach was the last to leave the field. Coach Bernie Nowakowski (Saint Mark's High School graduate), stayed on the field to leave Eddie with one final goodbye.

"Eddie, I want to thank you for being here with us today. It means a lot to all of us. And I want you to know something. You matter buddy, and you keep fighting. You're so strong and I want you to know something. Every time I wake up at 5 a.m. to start my day with a workout, I am going to be thinking of you buddy. Every rep, every lift, I'll be thinking of you. Because I'm inspired by how strong you truly are. Keep up the great work."

-Bernie Nowakowski

Winning on the field is important to Coach Drass and the Wolverines, but winning off the field is essential. Moving their muscles to compete in a sport they love, the Wolverines have created an experience that will last a lifetime for Eddie. If you would like to contribute to the Wolverines' efforts in providing support to Eddie Hazeldine, please email Themmo2012@gmail.com, or make a contribution of any size at www.musclemovementfoundation.org.

Special thanks to Mike Drass, Robert E. Clark II, Devin Filliben, Brett Ford, and all coaches and players!

 

Wesley College Football

Play with a Purpose to Sack Muscle Disease!

(left to right): MMF volunteer Raymond Otlowski, Eddie Hazeldine, Rob DeMasi, and Wesley's Brett Ford

(left to right): MMF volunteer Raymond Otlowski, Eddie Hazeldine, Rob DeMasi, and Wesley's Brett Ford

© Muscle Movement Foundation | www.MuscleMovementFoundation.org

 

 

The First State | MMF National Ambassador

Muscle Champion, Michael Smith, Becomes Muscle Movement Fdn. National Ambassador for Delaware!

Duchenne Muscular Dystrophy Muscle Champion, Michael Smith, increases involvement with MMF and becomes Offical Advocate

NEW CASTLE, DE - Michael Smith, currently a 20 year old student at Wilmington University, continues to overcome the obstacles presented in living with muscular dystrophy with great poise and compassion. Michael has been living and refusing to lose to muscular dystrophy for over fifteen years, and his accomplishments speak for themselves. Michael graduated from Thomas McKean High School in Wilmington, DE where he voluntarily became involved with organizations that fought neuromuscular disease; one of the organizations being the Muscle Movement Foundation. Currently enrolled at Wilmington University to further his education, he has decided to increase his involvement with the Muscle Movement Foundation, since he enjoys how the MMF brings awareness and support to his fellow "Muscle Champions" - individuals living with muscle disease. Having a strong passion for athletics, he juggled the decision to major in sports management or video game design, and has narrowed his choice to video design. Now pursuing a college degree, it was important for Michael to continue his involvement with athletics in college through the Muscle Movement Foundation.

The start of this fall was very exciting for Michael! A new school, a new experience, but more specifically, a new football season! Michael loves football; in fact, if you saw Michael and family on a Sunday you would quickly learn of their favorite team from the family's attire. His favorite NFL Team is the Dallas Cowboys, which he has no problem representing in the prominent Philadelphia Eagles territory of Wilmington, DE! Although he loves the game, he unfortunately has never been able to compete. Michael did not begin to walk until 22 months old. Michael's parents considered Michael to simply be a "late- walker" but their suspicion increased after Michael displayed additional symptoms.

In May of 2001, at just 5 years old, Michael was diagnosed with Duchenne Muscular Dystrophy (DMD). Duchenne Muscular Dystrophy is one of nine forms of muscular dystrophy categorized as a genetic disease that causes muscle degeneration and weakness throughout the body. It is 100% fatal. Just six years after being diagnosed, Michael experienced the debilitating effects of muscular dystrophy and lost his ability to walk. At just 11 years old Michael successfully completed the transfer to a power wheelchair, in order to maintain physical autonomy. Resilient, Michael is not defined by his disease and lives life just as "normal" as any other 20 year old. He wanted to take initiative in helping others overcome the difficulties in living with muscle damaging disease, and inspire others along the way. Michael stated in a recent interview, "You know if I could participate, I'd be out there in a second", pointing to the St. Elizabeth High School Football Field - a local team on board with the MMF. Despite the obstacles presented in living with muscular dystrophy, Michael continues to persevere through adversity with a smile on his face. His motto:

"There is no dis- in my ability!"

-DMD Muscle Champion, Michael Smith

Michael Smith has joined the Saint Elizabeth Vikings for the second consecutive year through the Muscle Movement Foundation's team, Team Muscle Up. Team Muscle Up consists of athletes that use their healthy muscles, to excel in their sport, while helping individuals living with "sick muscles" (muscle disease). Michael Smith will be in attendance at several home games and will serve as the Vikings' honorary captain/coach this season!

(left to right): St. Elizabeth High School Director of Athletics, Joe Papili, MMF Official Advocate, Mike Smith, and St. Elizabeth's Offensive Coordinator Joseph Wright

(left to right): St. Elizabeth High School Director of Athletics, Joe Papili, MMF Official Advocate, Mike Smith, and St. Elizabeth's Offensive Coordinator Joseph Wright

© Muscle Movement Foundation | www.MuscleMovementFoundation.org

HockessinFest | Sing for Strength

Shooting Shark Band "Rocks the Stage" in Honor of Muscle Champions

All day music benefit in Hockessin, DE raises awareness and support for Muscle Movement Foundation!

HOCKESSIN, DE - The Shooting Shark Band, a local band consisting of high school students from the Charter School of Wilmington, hosted an all day music benefit to raise awareness and contributions for the Muscle Movement Foundation. Shooting Shark lead guitarist and vocalist, Nathan Lamborn, took initiative in contacting MMF founder and president, Rob DeMasi, requesting to hold an event for the MMF. He quickly received the approval and Nathan began his planning.

Nathan and his fellow Shooting Shark Band members, Evan Kipp (drums/vocals), Brian Johansson (bass guitar/vocals), and Ethan Andress (trumpet/keys), gathered to brainstorm and put a plan into action. The group needed a name for the event and wanted one to imply the strong commitment of the community coming together. HockessinFest - the event is hosted in Hockessin, DE and the event is a music fest! Perfect! After establishing the perfect name for the event, the band successfully contacted eight additional music groups, which were more than happy to participate. Now with a strong team of musicians to perform at the event, they wanted to add more fun to the music fest! The band contacted several food trucks, a water ice truck, designed fun backyard games, such as cornhole, face painting stations, and a volleyball course, and promoted the event with flyers in the local neighborhoods of Hockessin, DE.

The Shooting Shark Band, Anatomy of an Outcast, Kiki Villani, Feet First, 46 Sherman, 45s and the Funky Punks, Afterburn, Corn and the Husk, and Tears for Bullets united on August 20th at the Center for Creative Arts for the music festival. Family, friends, and supporters gathered to sing and dance in honor of the MMF's Muscle Champions! Since the MMF's "Muscle Champions" - individuals living with muscle disease - are robbed of their ability to walk and talk, Nathan and fellow musicians wanted to support the MMF in a way they enjoyed and knew best - through song and dance! The nine bands filled the center hall with good music, high energy, and good vibes throughout the day and into the night, singing and dancing for the over one million Americans affected by neuromuscular disease!

Special thanks to all Charter School of Wilmington student volunteers, Maya Dewson-Tippings (photographer), Cindy Kipp, Maureen Johansson, Paul Throne and the Center for Creative Arts Center, and all supporters and musicians in attendance!

Shooting Shark Band lead guitarist/vocalist, Nathan Lamborn! (Image courtesy of Maya D.T. Copyright 2016, Maya D.T.)

Shooting Shark Band lead guitarist/vocalist, Nathan Lamborn! (Image courtesy of Maya D.T. Copyright 2016, Maya D.T.)

© Muscle Movement Foundation | www.MuscleMovementFoundation.org

 

 

 

 

WilmU Baseball | 2016 MVP

WilmU Head Baseball Coach, Brian August, and Team Crown Eddie Hazeldine as MVP

Wilmington University Baseball Team Joins MMF; Raises Over $2,000 for Local Muscle Champion!

NEWARK, DE - On March 3, 2016, the Division II Wilmington University Baseball Team added a very special recruit to their team. Administrators, players, family, and friends gathered as Head Coach Brian August signed 13 year old duchenne muscular dystrophy (DMD) survivor, Eddie Hazeldine, to a 2016 Letter of Participation with the team. Signing Eddie to their team, the Wildcats were excited to begin their spring season!

Throughout the season Eddie and family were welcomed by the Wildcat community with open arms. Their home games consisted of Eddie playing catch in the dugout - ensuring his fellow teammates were warmed up for the next inning! Eddie's smile and presence in the dugout hightened the team's levels of energy and comradery! While Eddie was busy during the games, his family openly socialized with Wildcat families and friends. The welcoming season was truly an amazing experience for the entire Hazeldine family.

On 5/17/16, the Wildcats held their end of the season baseball banquet at Timothy's of Newark restaurant. Coach Brian August presented special awards and honored numerous players; such as, the team's senior Wildcats - Jay Kluka, Chris Lopez, Mike Torres, and Peter Monahan! After honoring his seniors, Coach August presented the next award....

"The next award goes to a very special player who joined our team this season. He is the only player to ever sign to a full scholarship to our team and be presented this award as a rookie. His performance day in and day out was outstanding! This special player wakes up every day and fights. He fights a battle that many of us physically and mentally would struggle to endure. And despite this battle, he smiles day to day and always overcomes what obstacles may stand in his way. At the end of the day, no matter what team we played and no matter what adversities and obstacles we were faced with, he always persevered as a true champion. This champion showed us how to win and become champions all season long. The 2016 Wilmington University Baseball Team Most Valuable Player (MVP) Award goes to Muscle Champion, Eddie Hazeldine!"

Every seat in the restaurant suddenly became empty, as every Wildcat athlete, family, and friend delivered a standing ovation to Eddie as he received his award. Tears of happiness overwhelmingly filled Mrs. Hazeldine's eyes, seeing her son honored. Eddie received the team's MVP award, smiling ear to ear. Coach Brian August announced an additional surprise,

"Eddie, we are truly amazed by your strength and thankful that you have taught us to play like champions, and live like champions. In addition to presenting you with the 2016 MVP award we would like to present you with this team jacket in memory of this outstanding season with us. Lisa, in addition, on behalf of the Wilmington University Baseball Team, family, and friends, we would like to present the Muscle Movement Foundation this envelope of $2,535 which we have raised to assist Eddie with his fight.

 

Special thanks to Wilmington University administration, Head Baseball Coach Brian August, coaches, players, families, and friends for providing essential support and creating a memorable season for Eddie that will last a lifetime! Thank you for joining the Muscle Movement Foundation!

© Muscle Movement Foundation | www.MuscleMovementFoundation.org