Spartans vs. Vikings | Sack Muscle Disease

3RD ANNUAL MUSCLE MOVEMENT FDN. DELAWARE SACK MUSCLE DISEASE GAME

SAINT MARK’S HIGH SCHOOL HOSTS ST. ELIZABETH HIGH SCHOOL IN HONOR OF OVER ONE MILLION AMERICANS AFFECTED BY MUSCLE DISEASE

WILMINGTON, DE - The Saint Mark’s High School Spartans and the St. Elizabeth High School Vikings carry a strong Catholic Conference Rivalry history in the state of Delaware. Each year, both teams compete to secure a playoff position and conference bragging rights. Despite the competitiveness of both teams, each scholar-athlete continues to embrace the Muscle Movement Foundation (MMF); helping to raise vital awareness and support for local families who are affected by neuromuscular disease.

  Saint Mark’s and St. Elizabeth High School Captains proudly welcome their honorary captains from the Muscle Movement Fdn. MMF Muscle Champion, Max French, joined the Vikings, and MMF Muscle Champion, Roman Graham, joined the Spartans in 2017!

Saint Mark’s and St. Elizabeth High School Captains proudly welcome their honorary captains from the Muscle Movement Fdn. MMF Muscle Champion, Max French, joined the Vikings, and MMF Muscle Champion, Roman Graham, joined the Spartans in 2017!

On Saturday, November 3rd, 2018, the Spartans look to keep the MMF Game Sword in their possession as they host the Vikings in the 3rd Annual MMF Delaware Sack Muscle Disease Game! The game will begin at 7:00 p.m. Last year, the Spartans were crowned champions after defeating the Vikings 35-0. Saint Mark’s took the field with MMF Muscle Champion, Roman Graham - a young boy who was born with hypotonia and is enduring genetic testing for neuromuscular disease. The Vikings proudly took the field with MMF Muscle Champion, Max French - a teenage boy living with RYR1 Myopathy. In 2016, the game also resulted in a Spartans victory. Saint Mark’s took the field with MMF Muscle Champion, Mason Nellius - a young boy living with becker muscular dystrophy. The Vikings welcomed MMF Muscle Champion, Max French! Although the Spartans have claimed the game sword for the past two consecutive seasons, the Vikings look forward to bringing the sword back to campus for the first time under the coaching of Marvin Dooley!

  2016 Vikings’ Captains proudly pose with MMF Muscle Champion, Max French, following a hard fought game in 2016!

2016 Vikings’ Captains proudly pose with MMF Muscle Champion, Max French, following a hard fought game in 2016!

  2017 Spartan Captains take a moment to welcome MMF Muscle Champion, Roman Graham, before the game!

2017 Spartan Captains take a moment to welcome MMF Muscle Champion, Roman Graham, before the game!

This year the winning team will be presented the game trophy, which is a large sword. The sword symbolizes The Sword of the Spirit, which is referred to as The Word of God in Ephesians 6:10-18 in the Bible. The sword also symbolizes the strength and protection both teams hope to add to the lives of affected families in need!

Although a Catholic Conference Rivalry Game, Saint Mark’s and St. Elizabeth continue to unite for the common good of the MMF’s fight against neuromuscular disease!

  Saint Mark’s Spartans (2016) celebrate with MMF Muscle Champion, Mason Nellius

Saint Mark’s Spartans (2016) celebrate with MMF Muscle Champion, Mason Nellius

MMF Delaware Sack Muscle Disease Game:

2016 - St. M (35) vs. St. E’s (20)

2017 - St. M (35) vs. St. E’s (0)

2018 - 11/3, 7:00 p.m. at Saint Mark’s H.S.

 Saint Mark’s Spartans (2017) celebrate with MMF Muscle Champion, Roman Graham!

Saint Mark’s Spartans (2017) celebrate with MMF Muscle Champion, Roman Graham!



Questions?: info@musclemovementfoundation.org

© Muscle Movement Foundation 2018 | www.MuscleMovementFoundation.org

MMF at Ohio State | Life-Changing Semester

MUSCLE MOVEMENT FOUNDATION AT OHIO STATE STUDENTS FINISH LIFE-CHANGING PROJECT FOR LOCAL LIVING WITH MUSCULAR DYSTROPHY

OHIO STATE UNIVERSITY STUDENTS BUILD PATH FOR MMF MUSCLE CHAMPION

GROVEPORT, OH - Dominic Cicconi, the Founder of the Muscle Movement Foundation at Ohio State, was excited to return to campus for the fall semester of 2018 after completing an internship as an engineer in Robinson, IL and Detroit, MI. After an exciting and successful internship, Dominic was excited to reunite with his fellow club officers to continue to enhance awareness and support for the Muscle Movement Foundation on campus. Dominic was straightforward when asked about his goals for this semester:

“We want to find an individual affected by neuromuscular disease in our local area and provide an accommodation to increase the individual’s quality of life.” -Dominic Cicconi

Dominic understands the importance of the accommodations the Muscle Movement Foundation provides to families in need. In March 2017, Dominic was diagnosed with Guillain-Barre syndrome after being partially paralyzed for three months. To this day, he gives credit to the support of his family, friends, and support team for assisting him during the weakest times of his life. He hopes to provide the same assistance to a Muscle Movement Fdn. Muscle Champion in need.

“Our goal is to continue Rob’s vision (Founder and President of the Muscle Movement Foundation) to transform hope into reality. Rob and I both understand what it feels like to lose the ability to shower, walk, eat food, talk, and complete basic daily tasks. If my club members and I can eradicate any of the uncertainty, fear, doubt, or stress in the life of an individual battling similar symptoms, we are accomplishing our goal.” -Dominic Cicconi

Dominic and students from the Ohio State University were ecstatic to meet their first Muscle Movement Fdn. Muscle Champion this semester. Ron Bobst has been living with Becker muscular dystrophy for approximately 34 years. Becker muscular dystrophy (BMD) is a degenerative disease that causes weakness in the pelvic region, thighs, shoulders, and can also affect the heart. The disease is very similar to duchenne muscular dystrophy (DMD); however, the disease is said to progress at a slower rate than DMD. There is currently no cure.

Ron submitted an application for assistance to the Muscle Movement Foundation (MMF) this fall. He requested assistance with basic chores around the house such as, removing shower doors, changing light bulbs, and replacing shower heads. MMF at Ohio State club members were honored to visit Ron and assist with the tasks. Ron also submitted a “wish list”, which included a wheelchair accessible path to connect his driveway to his deck.

Last week, Ron’s wish came true! Student members of the MMF at Ohio State traveled to Ron’s house to construct a concrete wheelchair accessible path. This physical accommodation will significantly enhance Ron’s autonomy and quality of life just in time for the snow!

Questions?: info@musclemovementfoundation.org

© Muscle Movement Foundation 2018 | www.MuscleMovementFoundation.org

MMF Muscle Champion | Greg King

GREGORY KING SIGNED TO JERSEY SHORE WILDCATS HOCKEY TEAM BY WAY OF MUSCLE MOVEMENT FOUNDATION

JERSEY SHORE WILDCATS HOCKEY TEAM PARTNERS WITH MMF FOR 2ND YEAR

WALL, NJ - Coach Scott Harrington and the Jersey Shore Wildcats Bantam Black Hockey Team joined the Muscle Movement Foundation (MMF) last season and signed Muscle Champion, Harry Smith, to their team. The result…a life-changing experience for Coach Harrington, his players, families, and Harry! The team finished the season as New Jersey Youth Hockey League (NJYHL) Champions and finished as the top team involved in the Muscle Movement Foundation Charity of Champions Campaign!

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The Wildcats dedicated every game to Harry Smith’s fight against Emery-Dreifuss Muscular Dystrophy (EDMD); a form of muscular dystrophy that is characterized by muscle degeneration and weakness. The disease primarily affects an individual's voluntary muscles causing severe weakness and degeneration in the calves, shoulders, and upper arms. Additionally, the disease may cause contractures (hardening of muscles or tissue) in the heels, back of the arms (elbows), and neck.

By the end of the season, the scholar-athletes raised almost $5,000 to empower Harry Smith with life-changing accommodations. The Muscle Movement Foundation provided Harry with a wheelchair accessible automobile to enhance his autonomy and quality of life! Today, Harry independently utilizes his power wheelchair and powers in and out of his vehicle under his own strength! He is also now playing sled hockey!

  MMF Founder, Rob DeMasi, and Muscle Champion, Harry Smith!

MMF Founder, Rob DeMasi, and Muscle Champion, Harry Smith!

  MMF Muscle Champion, Harry Smith, ready for sled hockey!

MMF Muscle Champion, Harry Smith, ready for sled hockey!

Harry is excited to pass the torch to a new MMF Muscle Champion this season! This year, Coach Scott Harrington and the Jersey Shore Wildcats Hockey Team have signed Gregory King to their team! Greg is a 14 year old freshman at Middletown High School South. He lives in Middletown with his mother, Patty, and his Dad, Pete. Greg also has a very fun and energetic labradoodle puppy named Hope.

Like Harry, Greg has a form of muscular dystrophy.  It is called duchenne muscular dystrophy (DMD); a genetic disease that causes muscle degeneration and weakness. Statistics show that the disease affects about 1 in every 3,500 boys nationwide. The disease is inherited in an x-linked recessive pattern, which explains the detrimental outcome of the disease.

  MMF Muscle Champion, Gregory King, in the box at the Jersey Shore Wildcats arena!

MMF Muscle Champion, Gregory King, in the box at the Jersey Shore Wildcats arena!

Marcus Franco, a scholar-athlete on the Jersey Shore Wildcats Hockey Team, met Greg in the 4th grade and they have been friends ever since. They are now in the same high school together and excited to be involved in the great sport of hockey. Greg is a big hockey fan! He loves to play NHL 18 on Xbox. His favorite team is the New Jersey Devils and his favorite player is Taylor Hall. He enjoys watching all hockey – from the NHL to the NJYHL!

When Greg isn’t in school or watching hockey, he enjoys going to the movies, swimming in his pool, and traveling to a family cabin in Harpersfield, NY where he can hunt and fish with his Dad. Greg is also a big fan of chicken wings, chili dogs, and barbecue!

By way of the Muscle Movement Foundation, Greg is ready for a fun-filled year thanks to Coach Scott Harrington and the families of the Jersey Shore Wildcats!


Questions?: info@musclemovementfoundation.org


© 2018 Muscle Movement Foundation | www.MuscleMovementFoundation.org

Josh Scheck | 2018 MMF National Athlete of the Year

JOSH SCHECK EARNS 2017-2018 MUSCLE MOVEMENT FDN. NATIONAL ATHLETE OF THE YEAR AWARD

NEW JERSEY YOUTH HOCKEY PLAYER DEDICATES SEASON TO NEW TEAMMATE

WALL TOWNSHIP, NJ - Coach Scott Harrington and the Jersey Shore Wildcats Bantam Black Hockey Team were thrilled to welcome a special teammate to the ice this past hockey season. The team joined the Muscle Movement Foundation's Charity of Champions campaign; a campaign that unites athletes across the country in the fight against neuromuscular disease. By way of the Muscle Movement Foundation (MMF), Harry Smith was signed to the Jersey Shore Wildcats Hockey Team!

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Harry is living and refusing to lose to Emery-Dreifuss muscular dystrophy (EDMD). EDMD is a form of muscular dystrophy that is characterized by muscle degeneration and weakness, which primarily affects an individual's voluntary muscles. The disease commonly affects the individual's calves, shoulders, upper arms, and additionally may cause contractures (hardening of muscles or tissue) in the heels, back of the arms (elbows), and neck. EDMD also commonly displays heart problems. The disease is a genetic condition and may be inherited in an x-linked recessive pattern (from the mother), autosomal dominant pattern (from either parent), or autosomal recessive pattern (from both parents). Genetic research continues in attempt to develop a stronger understanding of the disease and discover effective therapies that may assist with the presence of muscle degeneration.

Unfortunately, Harry lost his ability to stand and walk this past year. Due to the progressive degeneration of Harry's muscles, and after being denied insurance coverage for physical therapy, Harry's strength and mobility diminished. This is when Josh Scheck, a fourteen year old scholar-athlete, stepped up to make a difference. Josh immediately began to raise awareness and contributions to directly enhance Harry’s strength, autonomy, and quality of life. He dedicated each game to his teammate, Harry Smith #55, raising donations during each performance on the ice. Additionally, Josh hit the streets to spread the Muscle Movement Fdn. message. He visited local businesses to ensure they understood their potential impact in becoming involved. Businesses such as, NJ Spine and Wellness, the Foundation for MERS, American Stair & Rail Artisans, LC Doggy Club, DCG Creative, Manalapan BOE President, Dotty Porcaro, Deputy Mayor of Manalapan Township, Susan Unger Cohen, family and friends of the Jersey Shore Wildcats, and more were more than happy to support Josh in his fundraising efforts!

  Muscle Movement Fdn. Muscle Champion, Harry Smith, and Josh Scheck!    Photo credit: Jerry Carino, Asbury Park Press

Muscle Movement Fdn. Muscle Champion, Harry Smith, and Josh Scheck!

Photo credit: Jerry Carino, Asbury Park Press

Josh lead the MMF Charity of Champions scoreboard throughout the 2017-2018 year. He competed against more than 100 athletes and over 20 teams from 10 states throughout the country; in efforts to raise the most awareness and support for a local Muscle Movement Fdn. Muscle Champion in need. Josh single-handily raised $2,500 of the Jersey Shore Wildcat’s $4,800 raised for MMF Muscle Champion, Harry Smith! That is more than 50% of the team’s total initiative, and 250% of Josh’s pre-season goal of $1,000!

This impressive young man was honored by way of MMF Founder and President, Rob DeMasi, at the Jersey Shore Wildcat’s end-of-year ceremony. Josh was awarded the 2017-2018 Muscle Movement Fdn. National Athlete of the Year award; an award that acknowledges a single scholar-athlete in the United States who is creating an impact in the muscle disease community through advocacy and initiative.

  Muscle Movement Fdn. Muscle Champion, Harry Smith, and Josh Scheck race down the road!    Photo Credit: EvaJo Alvarez

Muscle Movement Fdn. Muscle Champion, Harry Smith, and Josh Scheck race down the road!

Photo Credit: EvaJo Alvarez

Josh lead his team to a National Championship on and off the ice! In addition to Josh Scheck being crowned the 2017-2018 MMF National Athlete of the Year, the Jersey Shore Wildcats Hockey Team was crowned 2017-2018 MMF National Champions! Click here to read the team’s article! Furthermore, Josh’s teammates Billy Hrehowsik and Marcus Franco were also recognized! Billy was awarded the 2017-2018 MMF National Athlete of the Year Second Runner-Up Award and Marcus earned the 2017-2018 MMF National Athlete of the Year Runner-Up Award!

Congratulations to Josh and the entire Jersey Shore Wildcats Bantam Black Hockey Team for demonstrating exemplary leadership and dedication to the Muscle Movement Fdn., on and off the ice, in honor of their teammate #55 Harry Smith!

Click here to view a live video about Harry and team via Jerry Carino, Asbury Park Press.

  2017-2018 Muscle Movement Fdn. National Athlete of the Year, Josh Scheck

2017-2018 Muscle Movement Fdn. National Athlete of the Year, Josh Scheck

As you can see, impact starts with initiative! Our 2018-2019 MMF Charity of Champions campaign is now active! Are you or a loved one on an athletic team? Click here to create your very own Muscle Movement Fdn. page, empower locals affected by muscle disease, and earn accredited community service hours along the way. It takes a team effort to fight muscle disease. And our team consists of scholar-athletes across the country!

Questions?: info@musclemovementfoundation.org

© 2018 Muscle Movement Foundation | www.MuscleMovementFoundation.org

MMF Crush Course | Dewey Beach, DE

LOCALS BRAVE HYPE OF HURRICANE AND HEAD TO DEWEY BEACH TO “CRUSH” MUSCLE MOVEMENT FDN. COURSE

MUSCLE MOVEMENT FDN. DELAWARE CRUSH COURSE RAISES OVER $10,500 TO COMBAT NEUROMUSCULAR DISEASE

DEWEY BEACH, DE - The Muscle Movement Foundation’s Delaware Crush Course was hosted in Dewey Beach, DE this past Saturday. The six block endurance course was located on the beach from Dagsworthy Avenue to Collins Avenue, and featured an after party at The Starboard Restaurant. Despite the potential weather conditions presented by Hurricane Florence, the Muscle Movement Foundation decided to schedule the event as planned.

Although the hype of the hurricane flooded the news, locals in the Sussex County, DE area were not intimidated by the potential weather. In fact, many messages, posts, and comments on social media embraced the potential hurricane with comments such as,

“With high ocean tides, a small beach, sand under my feet, and an orange crush at the finish line, I’m ready to crush the course! I’ll be there!” -Anonymous

“Hurricane Florence on the horizon, wind in our faces, and sand in our teeth. It’s all about showing up! -MMF Crush Course Team Captain, Kristen Stout

“We are excited to welcome many families, and I don’t think the potential weather will slow down the MMF’s participants. In fact, I believe there is an important message within all of this — the MMF’s affected families may endure adversity throughout their lives, which may very well feel like a hurricane. Muscle disease may cause lots of uncertainty, adversity, and obstacles. Nonetheless, the Muscle Movement Fdn.’s Muscle Champions, and families, remain unstoppable in spite of life’s hurricanes. We are honored to welcome supporters to the Town of Dewey Beach in honor of the MMF and over one million Americans affected by neuromuscular disease.” -Mayor TJ Redefer

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The ocean’s tides were high and there was little beach to operate with; nonetheless, the sun was shining and the sky was clear! Over 100 registrants checked in at The Starboard Restaurant at 10:30 a.m. Registrants enjoyed the sun, hydrated, and changed into their MMF Crush Course tank tops to prepare for the event. At noon, registrants were directed to the beach on Dagsworthy Avenue. MMF Crush Course Committee Member and Personal Trainer of RISE Fitness, “Red” Ryan Ennis, welcomed the participants and explained the course. The participants were separated into two groups. The first group shot from the starting line like they were launched from a cannon! The participants made their way down the six block endurance course. When the first group completed station #3, the second group made their way down the beach!

  Participants in group #1 sprint to the first station of the MMF 2018 Delaware Crush Course

Participants in group #1 sprint to the first station of the MMF 2018 Delaware Crush Course

Following the event, Steve “Monty” Montgomery and The Starboard Restaurant welcomed all registrants in “The Shark Tank” — The Starboard Restaurant’s lively VIP room! The Starboard Restaurant donated tons of food such as, caesar salads, pretzels with spicy mustard, fresh fruit, jerk chicken with honey mustard, and old bay wings with blue cheese and ranch! The 21 and older crowd also received two complimentary orange crush drinks! Additionally, Jack’s Country Maid Deli, who is an annual sponsor of the Muscle Movement Fdn., provided four fresh six-foot subs! The afternoon was filled with great company, smiles, fun conversation, a live raffle, music, and more fun!

  Muscle Movement Fdn. 2018 Delaware Crush Course Committee Members and volunteers take a picture with MMF Muscle Champions, Josh Wallace (front left), and Colty Wallace (held in the arms of grandfather Kenneth Wallace) at the MMF Crush Course after party at The Starboard!

Muscle Movement Fdn. 2018 Delaware Crush Course Committee Members and volunteers take a picture with MMF Muscle Champions, Josh Wallace (front left), and Colty Wallace (held in the arms of grandfather Kenneth Wallace) at the MMF Crush Course after party at The Starboard!

Thanks to Mayor TJ Redefer, Commissioner Paul Bauer, The Starboard Restaurant’s Steve “Monty” Montgomery and Keith “Toastie” Kirk, and all event sponsors, supporters, and registrants, the Muscle Movement Foundation’s first ever Crush Course raised just over $10,500 to help provide life-changing accommodations to families affected by neuromuscular disease!

It takes a team effort to fight muscle disease. And the Muscle Movement Fdn.’s team in Dewey Beach, DE is STRONG!

Questions?: info@musclemovementfoundation.org

© 2018 Muscle Movement Foundation | www.MuscleMovementFoundation.org

MMF Resources | CICRF

MUSCLE MOVEMENT FDN. RESOURCE FOR NEW JERSEY FAMILIES

CATASTROPHIC ILLNESS IN CHILDREN RELIEF FUND; A NEW JERSEY STATE PROGRAM

TRENTON, NJ - The Catastrophic Illness in Children Relief Fund (CICRF) is a New Jersey state program, designed to assist families struggling with the financial responsibilities that accompany a child's significant health problems. The program has existed for over 25 years, and has assisted hundreds of families annually. Established by legislation in 1988, CICRF is intended to be a financial resource that can help New Jersey families, regardless of income, cope with medical expenses for their children that are not fully covered by insurance, state or federal programs, or any other resource. The Fund is designed to provide a financial safety net for families struggling with a child’s previously incurred expenses.

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Since its inception the Fund has helped 9,057 applicants with more than $180 million. For Fiscal Year 2018, the Commission has approved nearly $8 million in assistance for 349 eligible applicants. In Fiscal Year 2017, the Commission approved over $6 million in grants to 342 eligible applicants. 

BASIC ELIGIBILITY GUIDELINES:

  • The applicant child must be under the age of 22 when expenses were incurred.

  • Expenses must have already been incurred by the family; they cannot be prospective in nature.

  • The applicant family must reside in New Jersey for at least three months prior to application and at least one of the applicant parents must be a legal, permanent resident of the United States. For purposes of our program, parents who are residing in the U.S. under a work or educational visa would not be eligible for assistance, as they would be considered legal residents but not permanent ones.

  • The eligible out-of-pocket expenses must exceed 10% of the family’s annual income and 15% of any income over $100K. Example: a family with an income of $50,000 per year would need $5,000 in eligible expenses in order to meet their eligibility standard, but a family making $150,000 would need $17,500 (10% of $100K = $10K plus 15% of $50K = $7,500).

For more information or to apply online, visit www.njcatastrophicfund.org!

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The Catastrophic Illness in Children Relief Fund also works with The Camden County Board of Freeholders to create the Camden County Catastrophic Illness in Children Relief Fund Bridge Loan program which provides secure “bridge loans” up to $5,000 to be used for eligible down payments for expenses such as home modifications, vehicle modifications, or equipment necessary to improve mobility. This particular option is only available to families residing in Camden County, New Jersey. Click here to view this program!

The information in this article was approved and provided by way of:

 Amy E. Taklif, M.S.W., L.S.W.

Amy.Taklif@dhs.state.nj.us

Catastrophic Illness in Children Relief Fund

Main: 609-292-0600

Fax: 609-633-2947 or 609-341-5350

 

 

Questions?: info@musclemovementfoundation.org

© 2018 Muscle Movement Foundation | www.MuscleMovementFoundation.org

Rob DeMasi | Delaware Business Times Award Winner

ROB DEMASI SELECTED AS DELAWARE BUSINESS TIMES (DBT) 40 AWARD WINNER

MUSCLE MOVEMENT FDN. FOUNDER RECOGNIZED AS MOST ACCOMPLISHED LEADERS UNDER 40 YEARS OLD

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WILMINGTON, DE - Congratulations to our authentic and resilient leader, Rob DeMasi, for being selected as the 2018 Delaware Business Times (DBT) 40 Award Winner!

Delaware Business Times honored Rob as a DBT40 Winner – a select group of the region’s best and brightest young professionals, who are making a difference with their intelligence, initiative and innovation. The DBT40 Awards program recognizes 40 of Delaware's most accomplished leaders under 40 years old, for their Professional Accomplishments, Community Service, Leadership and Vision! Congratulate Rob by submitting a testimony: Click here!

  Photo By: Luigi Ciuffetelli

Photo By: Luigi Ciuffetelli

The DBT40 event is taking place on October 23, 2018 from 5:30-8:00 p.m. at The Baby Grand, 818 N. Market Street, Wilmington, DE! Tickets are $55 each.

This event is expected sell-out! Over 250 local executives and guests will gather to celebrate and honor Rob DeMasi, and Delaware’s top business leaders under 40, who have successfully taken their companies to the forefront of their chosen industries and given back to the community. 

If you would like to join the Muscle Movement Foundation Family at the awards ceremony, and celebrate Rob DeMasi's accomplishments, you may purchase a ticket at the following link: Click here!

Congratulations to all Delaware winners!

 

 

 

 

Questions?: info@musclemovementfoundation.org

 

© 2018 Muscle Movement Foundation | www.MuscleMovementFoundation.org

Muscle Movement Fdn. | 2017-2018 National Champions

JERSEY SHORE WILDCATS BANTAM BLACK HOCKEY TEAM CLAIMS MMF CHARITY OF CHAMPIONS TITLE

NJ YOUTH HOCKEY TEAM DEDICATES SEASON TO #55

WALL TOWNSHIP, NJ - Coach Scott Harrington and the Jersey Shore Wildcats Bantam Black Hockey Team were thrilled to welcome a special teammate to the ice this past hockey season. The team joined the Muscle Movement Foundation's Charity of Champions campaign; a campaign that unites athletes across the country in the fight against neuromuscular disease. By way of the Muscle Movement Foundation (MMF), Harry Smith was signed to the Jersey Shore Wildcats Hockey Team! 

 Head Coach Scott Harrington presents Muscle Movement Fnd. Muscle Champion, Harry Smith, his very own Jersey Shore Wildcats hockey jersey! #55!

Head Coach Scott Harrington presents Muscle Movement Fnd. Muscle Champion, Harry Smith, his very own Jersey Shore Wildcats hockey jersey! #55!

A special bond was immediately formed between #55 Harry Smith, and his new teammates! Harry was welcomed at practices, games, team parties, and events! Harry proudly attended the ice hockey games and cheered along his fellow teammates, while they competed in honor of his fight against Emery-Dreifuss muscular dystrophy (EDMD). EDMD is a form of muscular dystrophy that is characterized by muscle degeneration and weakness which primarily affects an individual's voluntary muscles. The disease commonly affects the individual's calves, shoulders, upper arms, and additionally may cause contractures (hardening of muscles or tissue) in the heels, back of the arms (elbows), and neck. EDMD also commonly displays heart problems. The disease is a genetic condition and may be inherited in an x-linked recessive pattern (from the mother), autosomal dominant pattern (from either parent), or autosomal recessive pattern (from both parents). Genetic research continues in attempt to develop a stronger understanding of the disease and discover effective therapies that may assist with the presence of muscle degeneration.

 Harry Smith when his team scores a goal!

Harry Smith when his team scores a goal!

 Harry Smith when the ref makes a bad call!

Harry Smith when the ref makes a bad call!

Unfortunately, Harry lost his ability to stand and walk this year. Due to the progressive degeneration of Harry's muscles, and after being denied insurance coverage for physical therapy, Harry's strength and mobility diminished. Additionally, Harry began to experience cardiac arrhythmias. The reality of EDMD truly started to show its ugly face; nonetheless, Harry's resiliency persevered. Every day Harry wakes up with a smile on his face and inspires people with his charm, big personality, and remarkable positive attitude! Harry and his family found hope in a service dog named Queenie. Although Queenie was not the biggest fan of ice hockey, she would stay by Harry's side while he cheered on his team! Harry's disease continued to progress throughout the season, and the Wildcats continued to play in his honor.

  Muscle Champion, Harry Smith, endures testing for his cardiac arrhythmia due to EDMD.

Muscle Champion, Harry Smith, endures testing for his cardiac arrhythmia due to EDMD.

  The unfortunate reality of disease impacts Harry, while his parents lovingly stay by his side every step of the way.

The unfortunate reality of disease impacts Harry, while his parents lovingly stay by his side every step of the way.

  Harry enjoys a NJ Wildcats game with Queenie by his side!

Harry enjoys a NJ Wildcats game with Queenie by his side!

Harry Smith invited Muscle Movement Foundation Founder, Rob DeMasi, and Vice President, Teresa Votta, to a game towards the end of the season. After an impressive performance, the ice hockey team embraced #55 Harry Smith on the ice after a team win! The team continued to excel on and off the ice in honor of their team captain, #55! The team advanced to the New Jersey Youth Hockey League (NJYHL) Championships this year. The Jersey Shore Wildcats played with the strength of #55 Harry Smith in their hearts! After a phenomenal season, the Wildcats finished the season exactly how they had planned; New Jersey Youth Hockey League Champions!

Winning the championship was special but the team was more concerned about the final score of an additional championship. The team competed in the Muscle Movement Foundation's National Charity of Champions campaign. The Wildcats relentlessly worked to raise awareness about neuromuscular disease in their local community, dedicate each game to #55, and encourage support by their loved ones to directly impact Harry Smith. By the end of the season, Coach Scott Harrington received the call from Muscle Movement Foundation Founder, Rob DeMasi. The Jersey Shore Wildcats were deemed 2017-2018 Muscle Movement Foundation National Champions and raised the most support for their Muscle Movement Foundation Muscle Champion! The campaign included over 100 athletes and over 20 teams from 10 states throughout the country. The Jersey Shore Wildcats Hockey Team raised an impressive $4,800 in honor of #55 Harry Smith!

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  Jersey Shore Wildcats' Josh Scheck, earned the 2017-2018 MMF National Athlete of the Year Award! This award is presented to a single scholar-athlete who raises the most support for their MMF, Muscle Champion. Over 100 athletes across the country competed for this award.

Jersey Shore Wildcats' Josh Scheck, earned the 2017-2018 MMF National Athlete of the Year Award! This award is presented to a single scholar-athlete who raises the most support for their MMF, Muscle Champion. Over 100 athletes across the country competed for this award.

Harry Smith and team were excited for their end of the year awards ceremony! Once again, #55 Harry Smith was sure to extend the invite to Muscle Movement Foundation Founder, Rob DeMasi! Rob traveled to Wall Township, NJ to enjoy delicious food, interact with the athletes, meet the Wildcat families, and learn about the life-changing memories created throughout the season. After fun games, delicious food, and a live ice hockey game on television, the Wildcat families and athletes gathered for the presentation. Gloria Smith, the mother of Harry Smith, addressed the team:

When you have a child, you have hopes and dreams for them, and it felt like everything got squashed. And it felt like life was over for me. And it felt like a new reality had to happen. To figure out how we could get by. And than this year came along and you guys all taught us a new life. You taught Harry how to be brave. Harry received an award in school for perseverance and bravery, and before that he was not that person. And that’s because of you guys...I want you all to know you have changed this child’s life for the rest of his life. You made him a brave child. You made him a strong child, even though he does not have physical strength...
— Gloria Smith

Gloria, mother of Harry Smith, addresses Harry’s ice hockey team!

By the power of a Muscle Movement Foundation team, Muscle Champion Harry Smith gained another network of support, made life-lasting memories, and was presented life-changing accommodations that have enhanced his quality of life. Following the season, #55 Harry Smith was approved to receive a power wheelchair. Just two days prior to receiving his power wheelchair, Muscle Movement Foundation Founder, Rob DeMasi, traveled to Wall Township, NJ to present Harry, Gloria, and his family a wheelchair accessible van. Thanks to Coach Scott Harrington and the Wildcats' initiative in joining the Muscle Movement Foundation's Charity of Champions program, Harry now has the autonomy every boy deserves!

  Muscle Movement Foundation Founder, Rob DeMasi, with Muscle Champion, Harry Smith, and his new wheelchair accessible automobile.

Muscle Movement Foundation Founder, Rob DeMasi, with Muscle Champion, Harry Smith, and his new wheelchair accessible automobile.

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Coach Scott Harrington was interviewed after the season. During the interview, he elaborated on his experience in having his team join the Muscle Movement Foundation. Here is his testimony:

Partnering with the Muscle Movement Foundation has been something that I have wanted for my players in all of my coaching career. It has allowed me the opportunity to show my players what it means to be humble and appreciate what they possess. The reality of the struggles that many kids go through on a daily basis is not always tangible - most wouldn’t understand unless presented to them. I wanted an experience like this to help them appreciate what they have and make them aware of the struggles of others. Making these players understand the impact they can create for less fortunate children and contribute in their own unique ways is such an incredible experience!

Harry was a true inspiration to all my players. They all made him feel as if he was a part of the team, day in and day out. Harry affected the team as well right from the beginning. There was one particular player on the team that was struggling with giving the amount of effort that I knew he was capable of. He just needed something to drive him. I pulled this player aside before one of the games and showed him a video of Harry just simply trying to walk. I told him, “Do you see how much of a struggle it is for him just to take a few steps? This isn’t a problem for you in the least bit, so there is no reason for you to not put your very very best effort on the ice every day! Do it in honor of Harry.” And honestly since that conversation it turned that player’s season around completely. Receptive to the message, this particular athlete, and my entire team, played with a different view this year.

In all of my coaching career, I have always tried to instill in my players being humble on and off the ice. Rob DeMasi and the Muscle Movement Foundation helped reinforce my philosophy with my players, whether they are at practice, in a game, at school, or just doing daily chores at home. The experience of having the Muscle Movement Foundation as a part of my team has supported my philosophy and helped the team with a very successful season.

Rob DeMasi is a true inspiration to many and I love the vision and passion he possesses. I want to try and spread his message as far as I can reach, and I know this is just the beginning of a great relationship.”
— -Coach Scott Harrington

Coach Scott Harrington has continued as an ambassador for the Muscle Movement Foundation and continues to spread the MMF message in the sport of ice hockey and in his local community. Coach Harrington has added an additional ice hockey team to the Muscle Movement Foundation's "Charity of Champions" program, and is excited for Muscle Champion, Harry Smith, to join a new team this year. Additionally, he has helped Harry find a new passion in life - sled hockey! MMF Muscle Champion, Harry Smith, will begin sled hockey this year! Sled hockey is a sport that allows individuals who have physical disabilities to play the game of ice hockey! Harry is very excited for this year! Furthermore, Coach Scott Harrington has extended the Muscle Movement Foundation's resources to another local individual who is living with neuromuscular disease. The new family is excited to join an ice hockey team this year, by way of the Muscle Movement Foundation!

The power of a team is strong! When this power is brought to the forefront of the lives of families affected by muscle disease, it provides life-changing strength. Congratulations and special thanks to Muscle Movement Foundation "Muscle Champion", Harry Smith, Harry's family, Coach Scott Harrington, and the families of the Jersey Shore Wildcats Hockey Team for demonstrating excellence; on and off the ice!

It takes a team effort to fight muscle disease. With the strength of your team, the MMF's families will live life stronger!

If you are interested in joining the Muscle Movement Foundation's 2018-2019 Charity of Champions Program, email info@musclemovementfoundation.org!

 

 

Questions/Press Release: info@musclemovementfoundation.org

 

© 2018 Muscle Movement Foundation | www.MuscleMovementFoundation.org

 

Hockessin Parade | 4th of July

MUSCLE MOVEMENT FND. IS SCHEDULED TO PARTAKE IN THE HOCKESSIN, DE FOURTH OF JULY PARADE!

HOCKESSIN, DE - The Muscle Movement Foundation is thrilled to partake in the Hockessin, DE Fourth of July Parade! We will be using our muscles to raise awareness for the fight against muscle disease! Our team will be marching down Old Lancaster Pike from Kenwick Rd. to Valley Rd.! Keep an eye out for the Muscle Movement Fnd.'s "muscle car" and our custom float, which was designed by way of our board members! Several Muscle Champions will be joining us for the parade! Our Muscle Champions will be handing out educational brochures, candy, and more! Ensure you reach for a flyer to learn about our services, business partnerships, school clubs, community service opportunities, latest news, and upcoming events!

If you and your loved ones would like to join us in our Fourth of July march, please email info@musclemovementfoundation.org at your earliest convenience! We look forward to you joining us at the parade!

Time: Parade begins at 3pm
Where: Old Lancaster Pike, Hockessin, DE
Roads Closed: Old Lancaster Pike from Kenwick Rd. to Valley Rd.
Roads are to be closed from 1:45 p.m. through the end of the parade (approx. 4:15pm).

PARADE STAGING AREAS

Staging Area 1:  St. Mary of the Assumption Church, 7200 Lancaster Pike, Hockessin, DE 19707
Staging Area 2:  Sycamore Hill Church, 505 School House Rd, Hockessin, DE 19707
**Absolutely No Public Parking in Staging Areas.

For more information about the parade: Click here!

 

 

Questions?: Info@musclemovementfoundation.org

 

© 2018 Muscle Movement Foundation | www.musclemovementfoundation.org

WilmU Baseball | CACC Champions

WILMINGTON UNIVERSITY BASEBALL TEAM DEDICATES CHAMPIONSHIP SEASON TO MUSCLE CHAMPION, MIKE SMITH

WilmU Baseball Team Dedicates Season to New Wildcat Teammate

NEW CASTLE, DE - The Wilmington University Baseball Team finished an impressive 2018 season this spring. The Wildcats were crowned Central Atlantic Collegiate Conference (CACC) Champions; winning twice against Felician University to claim their first championship since 2015. Coach Brian August and team were thrilled to earn another championship for the record books; however, the Wildcats were ecstatic to be crowned champions in honor of a specific teammate.

Mike Smith, a 22 year old Wilmington University student, was signed to the Wildcat Baseball Team by way of Muscle Movement Fnd. Founder/President, Rob DeMasi and WilmU Head Baseball Coach, Brian August. Mike is living and overcoming the effects of duchenne muscular dystrophy (DMD); a genetic disease that causes muscle degeneration and weakness throughout the body. Despite the obstacles Mike endures, he has furthered his education at Wilmington University and has served as the Official Muscle Movement Fnd. Delaware State Ambassador since 2015!

      Coach Brian August and Wildcat seniors welcome Muscle Champion, Mike Smith, to the team!

    Coach Brian August and Wildcat seniors welcome Muscle Champion, Mike Smith, to the team!

On Thursday, May 24th, the Wildcats celebrated their victorious season at an end of the year awards ceremony located at Timothy’s of Newark in Newark, DE. Coach August presented many awards to his elite scholar-athletes. The final award was a special MVP award, which was presented to one player who demonstrated consistent resiliency, strong character, and remarkable attitude. Coach August presented this award to Muscle Movement Fnd. signee, Mike Smith; in addition to, several tournament awards that the team earned throughout the season, and a special envelope. Enclosed in the envelope was $2,000, which Mike’s teammates individually fundraised for him throughout the season! The contributions from the team will directly empower Mike Smith with life-changing accommodations.

  MMF President, Rob DeMasi (left), Wilmington University Director of Athletics, Dr. Stefanie Whitby, Head Baseball Coach, Brian August (right), and Muscle Champion, Mike Smith!

MMF President, Rob DeMasi (left), Wilmington University Director of Athletics, Dr. Stefanie Whitby, Head Baseball Coach, Brian August (right), and Muscle Champion, Mike Smith!

  The WilmU Wildcats Baseball Team rally around Muscle Champion, Mike Smith, for a 2018 team picture to celebrate their championship season!

The WilmU Wildcats Baseball Team rally around Muscle Champion, Mike Smith, for a 2018 team picture to celebrate their championship season!

Jackie Smith, Mike's mother, made her way to the front of the banquet room to address her son's fellow teammates and families. Emotion moved through Jackie's mind and body, bringing tears to her eyes.

Thank you to all parents for raising such fine men, who have fully embraced him. And I never thought I would attend a sports banquet where Michael would be honored. During our tough times, we have came across a lot of angels, and this year his angels have helped him through the sport of baseball. And I am so thankful, so so thankful..
— Jackie Smith
                       Jackie Smith and Mike Smith smile for a picture during signing day 2018.

                     Jackie Smith and Mike Smith smile for a picture during signing day 2018.

It takes a team of Wildcats to fight muscle disease! Special thank you to Coach Brian August for embracing the Muscle Movement Fnd. annually. The strength of a team is special, and the Muscle Movement Fnd. and the Smith family are grateful for our Wildcat family.

 

Questions?: info@musclemovementfoundation.org

 

© 2018 Muscle Movement Foundation | www.musclemovementfoundation.org