Bear Retro Fitness | 5k Benefits MMF

BEAR RETRO FITNESS SELECTS MUSCLE MOVEMENT FOUNDATION AS BENEFICIARY OF ANNUAL 5K

BEAR, DE - Bear Retro Fitness has selected the Muscle Movement Foundation as the beneficiary of their 3rd Annual Retro Fitness Run for the Heroes 5k walk/run. We are honored to announce the proceeds from this 5k will help provide life-changing accommodations to families who are affected by neuromuscular disease; such as, ALS, muscular dystrophy, and muscular atrophy.

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The event is taking place on Sunday, May 19th, 2019 at Twin Lakes Brewing Company! The 5k walk/run will start and end at the brewery. There is also an option to add a beer mile, which you can partake in individually or as a team. The 5k also includes an after party at Twin Lakes Brewery with a silent auction and 50/50! Each person registered who is 21+ will be given 2 beer tickets. There will also be pizza, pretzels, and dessert for the participants to enjoy. The 5k course is a great course for all levels of walkers and runners! Registration includes the following:

  • Event T-Shirt (first 200 registrants).

  • FREE VIP Month at Bear Retro Fitness.

  • 2 beer tickets (participants 21 years of age and older).

  • Access to the after party (guests who are not registered can join the fun for $10).

Lesley Frost and Derek Marshallsea spreading awareness about their 5k at the 2019    Muscle Movement Foundation Delaware Run for Strength 5k   ! Photo Credit: Fusion Racing

Lesley Frost and Derek Marshallsea spreading awareness about their 5k at the 2019 Muscle Movement Foundation Delaware Run for Strength 5k! Photo Credit: Fusion Racing

This event is being hosted by Retro Fitness (Bear, DE) and the Muscle Movement Foundation has been selected as the beneficiary of the event. If you have any questions about the event, please feel free to contact the managers of Bear Retro Fitness, Derek Marshallsea and Lesley Frost, at 302-276-0828.

Click here to RSVP and Invite Friends on Facebook.

Click here to download and print the event flyer!

© Muscle Movement Foundation | www.MuscleMovementFoundation.org

JMU SOFTBALL HOSTS UNCW IN STRIKEOUT MUSCLE DISEASE GAME

DUKES DEDICATE PERFORMANCE ON AND OFF THE FIELD TO LOCALS AFFECTED BY ALS, MUSCULAR DYSTROPHY, AND ADDITIONAL FORMS OF NEUROMUSCULAR DISEASE.

HARRISONBURG, VA - The James Madison University Softball Team trains year round to perform at an elite level on the field each spring season. Considering the success the team has achieved on the field, the Dukes’ training regimen seems to be very effective. In fact, the JMU Softball Team is currently ranked #17 in the country and #1 in the Colonial Athletic Association (CAA). The team has also accumulated a variety of conference championships:

  • CAA Champions (regular season): 2007 (tied), 2014, 2015, 2016, 2017, and 2018

  • CAA Conference Tournament Champions: 2009, 2014, 2016, and 2017.

  • NCAA Regional Champions: 2016

The championships and team wins are important to the program; nonetheless, Coach Loren LaPorte and Coach Jennifer Herzig are more concerned with their athletes’ success off the playing field. Instilling the importance of winning off the field is something Coach LaPorte and Coach Herzig stress daily. The coaches instill the importance of commitment, dedication, determination, and work ethic into their scholar-athletes so they can find success in all facets of life. One way they champion the importance of life values is by way of community service. The team is actively engaged in several community service projects throughout the year. Giving back to the community is a way the team can utilize their privileged gifts to enhance others’ lives, experience empathy and gratitude, directly apply their academic disciplines into their advocacy work, and share meaningful success with their fellow teammates, which builds a special team bond. When James Madison University’s Strength & Conditioning Coordinator, Christian Carter, introduced the coaches to the Muscle Movement Foundation (MMF) in 2017, the JMU Softball team was thrilled to add the fight against neuromuscular disease to their “must-do list”.

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The James Madison University Softball Team began their journey with the Muscle Movement Foundation (MMF) in 2017. Coach Christian Carter introduced the MMF to the JMU Softball Team through the team’s winter strength and conditioning training. He organized the JMU Softball StrongWoman Competition - a week of maximum effort strength lifts that are dedicated to the MMF and families who lose their ability to walk, talk, swallow, and breathe due to muscle disease. In 2017, the team raised over $3,500 to provide life-changing accommodations to families who are affected by neuromuscular disease. The team’s fundraising efforts successfully provided a local MMF Muscle Champion - an individual living with, and defying the odds against, neuromuscular disease - financial support to ease the financial burden created by a diagnosis. This past winter, the team raised their fundraising goal to $4,000 and were determined to surpass it. To no surprise, the team surpassed their goal and raised over $4,500 to help provide physical, financial, and emotional accommodations to families who are affected by muscle disease.

“We dedicate our StrongWoman competition each year to the men, women, and children affected by neuromuscular diseases to make the statement that they are not alone. We want to be an inspiration to them through our movements, actions, and physical strength, while we draw inspiration from them through their mental and emotional strength.”

-Coach Jennifer Herzig

Shortly after the 2018 StrongWoman competition, the James Madison University Athletic Department invited MMF Founder, Rob DeMasi, to speak at a coach’s meeting about the softball team’s involvement, the importance of community service, and the MMF message. Rob DeMasi shared his personal athletic accomplishments and amazing survivor story in defying the odds against myasthenia gravis (MG); a neuromuscular autoimmune disease. Coach Christian Carter, Coach Loren LaPorte, Coach Jennifer Herzig, and Rob DeMasi hope to continue to inspire involvement throughout the JMU Community!

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Rob DeMasi will return to campus tomorrow, Saturday, April 12th, 2019 to throw out the first pitch of the JMU Softball Game versus University of North Carolina Wilmington (UNCW). He explains the honor to throw out the first pitch as follows:

“There have been periods in my life where I could not walk…I could not swallow food or water…I would become extremely fatigued by completing basic daily tasks…And have experienced severe trouble in breathing for days on-end. These symptoms were due to myasthenia gravis (MG) and periods of exacerbation. Having the honor to throw out the first pitch is something I take pride in. It is a special symbol. A symbol for overcoming adversity…Overcoming weakness, paralysis, and fatigue…A symbol that demonstrates the true strength of my fellow MMF Muscle Champions. Through the encouragement of other individuals living with muscle disease, my family, friends, and community, I have been inspired to never give up and defy the odds in living with muscle disease. I am so thankful for this encouragement and want to ensure this encouragement and support is available to every family fighting muscle disease in our country. This is why I created the MMF, and why I will be throwing a fastball with strength tomorrow morning!” -Rob DeMasi

Flyers will be distributed at the game and announcements will be made to honor the over one million Americans who are fighting muscle disease, and raise awareness and support to transform hope into reality! We welcome you in adding to the JMU Softball Team’s efforts to “Strikeout Muscle Disease” by making a secure donation to their team’s Muscle Movement Fdn. page (ID #: 46-0554462):

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The JMU Softball Team currently sits in second place in the Muscle Movement Foundation’s Charity of Champions National Campaign. Click here to learn more about the MMF’s Charity of Champions Program.

© Muscle Movement Foundation | www.MuscleMovementFoundation.org

Muscle Movement Fdn. | Video Game Day

MUSCLE MOVEMENT FDN., A.I. DU PONT HOSPITAL, AND SALESIANUM SCHOOL HOST 2ND ANNUAL VIDEO GAME DAY FOR FAMILIES AFFECTED BY NEUROMUSCULAR DISEASE

VIDEO GAME DAY UNITES FAMILIES AFFECTED BY MUSCLE DISEASE

WILMINGTON, DE - The Muscle Movement Foundation, Alfred I. du Pont Hospital For Children, and Salesianum School’s Video Game Club have collaborated for the second consecutive year to host a family fun day for local families who are affected by ALS, muscular dystrophy, muscular atrophy, and additional forms of neuromuscular diseases. The family fun day is taking place at Salesianum School (Wilmington, DE) on Saturday, May 11th, 2019 from 11:00 a.m. - 2:00 p.m.

MMF Muscle Champions, Josh and Colty Wallace, enjoy a video game with a student from Salesianum School

MMF Muscle Champions, Josh and Colty Wallace, enjoy a video game with a student from Salesianum School

This event is hosted for families to connect, share resources, and learn about the wonderful resources and programs offered by way of the Muscle Movement Foundation and A.I. du Pont Hospital For Children. Children may enjoy playing video games, while lunch, snacks, and refreshments will be available for all families to enjoy.

If you are interested in attending this FREE event, please RSVP by Sunday, May 5th, 2019 to the following email address: mlosapio@gmail.com. If you have questions about the event please feel free to contact Mike Lo Sapio at 201-919-2643.

Salesianum School is located at 1801 N. Broom St., Wilmington, DE 19802.

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© Muscle Movement Foundation | www.MuscleMovementFoundation.org

3rd Annual MMF Delaware Run for Strength 5k

OVER 700 INDIVIDUALS TEAM WITH MUSCLE MOVEMENT FDN. AT DELAWARE RUN FOR STRENGTH 5K TO END MUSCLE DISEASE

3RD ANNUAL MMF DELAWARE RUN FOR STRENGTH 5K RAISES $22,325

WILMINGTON, DE - Rob DeMasi founded the Muscle Movement Foundation (MMF) in 2012 after enduring the physical, financial, and emotional hardships attributable to neuromuscular disease. Misdiagnosed with anxiety and depression for 3.5 years, it wasn’t until he lost his ability to walk, talk, swallow, and breathe that he finally received a proper diagnosis of myasthenia gravis (MG) in 2009. Exactly 10 years later, DeMasi brought the Muscle Movement Foundation’s Delaware Run for Strength 5k to the campus of his alma mater, Saint Mark’s High School — where he endured some of the weakest times of his life.

MMF Founder, Rob DeMasi, addresses supporters at the 3rd Annual MMF Delaware Run for Strength 5k.

MMF Founder, Rob DeMasi, addresses supporters at the 3rd Annual MMF Delaware Run for Strength 5k.

This past Saturday, DeMasi’s vision of uniting communities across his home state of Delaware came to life. Over 700 individuals teamed together with local families who are affected by muscle disease at the 3rd Annual Muscle Movement Fdn. Delaware Run for Strength 5k! This event is an inclusive 5k walk, or run, that features an awards ceremony inside the school. It provides the opportunity for the Muscle Movement Foundation’s Muscle Champions, and their loved ones, to cross the finish line together.

Muscle Champions are individuals who are living with muscle disease and champion the MMF Message. They choose to defy the odds against muscle disease and inspire others to do the same.

-MMF Founder, Rob DeMasi

Hundreds of participants used their muscles to fight muscle disease on 3/9/19 at Saint Mark’s High School.

Hundreds of participants used their muscles to fight muscle disease on 3/9/19 at Saint Mark’s High School.

The event was sponsored by over 60 local business sponsors including the following businesses who were Champion Level Sponsors: Alfred I duPont Hospital for Children, Wilmington University, BioTek reMEDys, ATI Foundation, and Saint Mark’s High School.

Hundreds of participants walked, ran, and powered their way through the 5k course, which started in the front of the school, proceeded down the main drive of Saint Mark’s High School, and into the neighborhood across the street from the main entrance. Many of MMF’s Muscle Champions were able to complete the 5k course by the power of their individual teams. Muscle Champions utilized adaptive running chairs and their loved ones pushed them throughout the course to cross the finish line together!

MMF Muscle Champion, Reid Lo Sapio, participating in the 5k by way of the strength of his team.

MMF Muscle Champion, Reid Lo Sapio, participating in the 5k by way of the strength of his team.

The participants were led by Michael DiGennaro, the head cross country coach at Saint Mark’s High School, who exemplified exceptional strength and stamina throughout the race. DiGennaro has been a valued supporter of the MMF for several years; implementing annual MMF Community Service Projects with his track and cross country teams. DiGennaro was first to cross the finish line in 15:55 and claimed his second consecutive MMF Delaware Run for Strength 5k gold medal! Sean Banko and Patrick Hally also earned impressive times — Banko finished in 16:58 earning Overall Runner-Up, and Hally finished in 17:24 earning Overall Second Runner-Up. Furthermore, Steve Sinko finished in 9th place overall while crossing the finish line with MMF Muscle Champion, Roman Graham, in an adaptive running chair! Sinko finished the 5k course in 18:35! Click here to see all results.

Michael DiGennaro (middle) leads the race participants and strides towards a record-breaking finish.

Michael DiGennaro (middle) leads the race participants and strides towards a record-breaking finish.

After the participants crossed the finish line they made their way inside of Saint Mark’s High School to enjoy the awards ceremony! Participants enjoyed bidding on raffle items, delicious food, drinks, and refreshments, and music produced by way of DJ Tony D! After all of the participants were replenished and rehydrated, the awards ceremony started. The awards ceremony was sponsored by way of Champion Trophies, Inc. The top 3 place winners in the following age categories received a Champion Medal by way of MMF National Ambassador, Rachel Engler: 9 & Under, 10-13, 14-19, 20-29, 30-39, 40-49, 50-59, 60-69, and 70+. Rachel was the guest speaker at the 2nd Annual MMF Delaware Run for Strength 5k, currently serves as the MMF’s National Ambassador in the state of Virginia, is a nurse anesthetist, a member of our U.S. Navy, an ex-NFL Cheerleader, and is living with and defying the odds against myasthenia gravis (MG)!

Hundreds of participants enjoyed an after party with food, drinks, refreshments, raffles, and a live DJ!

Hundreds of participants enjoyed an after party with food, drinks, refreshments, raffles, and a live DJ!

Four main awards were highlighted at the event:

1.) Michael DiGennaro crossed the finish in 15:55 claiming his second consecutive MMF Delaware Run for Strength 5k Champion Title! Michael received the Overall Male Champion Medal and the MMF Run for Strength 5k Joseph Williams Overall Champion Trophy. Sponsored by way of Champions Trophies, Inc., this trophy was designed in honor of the life of Muscle Champion, Joseph “Joeski” Williams. Joseph Williams, better known to his family as “Joe” or “Joey”, and to his friends as, “Joeski”, passed away from the effects of Friedrich’s Ataxia on October 31, 2013 at the age of 30.

Michael DiGennaro was crowned the 5k Overall Champion for the second consecutive year.

Michael DiGennaro was crowned the 5k Overall Champion for the second consecutive year.

Friedrich’s Ataxia (FA) is a specific form of muscle disease categorized as a mitochondrial disease. In mitochondrial diseases, components that create energy for a cell become defective. FA is a neuromuscular disease that causes muscle weakness and loss of balance/coordination, which mainly affects the nervous system and the heart. The specific genetic mutation occurs in a gene for a protein called frataxin. The disease is hereditary, which means it is inherited in a family. About 1 in every 50,000 individuals are affected by FA.

Joey was born and raised in Williamstown, New Jersey. He started out life as a normal infant, toddler and young boy. At the age of eleven, he was diagnosed with Friedrich’s Ataxia and by age sixteen, he was in a wheelchair. Despite the prognosis of FA, Joey never gave up his hope for a cure.

Muscle Champion, Joseph Williams, was a sports fanatic. He loved Philadelphia sports teams!

Muscle Champion, Joseph Williams, was a sports fanatic. He loved Philadelphia sports teams!

Joey was an avid sports fan and attended almost every home Philadelphia Phillies and Eagles game and was also present at many Philadelphia 76ers and Flyers games. Joey never sat home and felt sorry for himself. He was always on the go and enjoyed planning where he was going to go next. When there was a home Eagles game, Joey was up at the crack of dawn ready to tailgate before the game. The highlight of his sporting days was attending the World Series in 2008 when the Philadelphia Phillies were crowned World Champions! Joey had an amazing family that adored him and was always there for him. He had wonderful friends that supported him and included him in all of their activities, where Joey was often the one planning the activities. Joey traveled to South America, Mexico, took several cruises, and traveled to many places in the United States. Even when Joey’s health deteriorated, he pressed on and never lost his sense of humor. Joey always had something funny to say and whenever Joey was around, there was always laughter in the room.

Muscle Champion, Joseph Williams, was the life of the party!

Muscle Champion, Joseph Williams, was the life of the party!

Joey received a black Labradoodle service dog named Amigo. Amigo was not only Joey’s service dog but his companion and best friend. Amigo went everywhere Joey went. If Joey was hospitalized, Amigo was right by his side in the hospital room or in the bed with him. Joey and Amigo had a very special bond and were inseparable.

The one word that was often used when describing Joey was “amazing” and he was always referred to as an inspiration. Joey inspired many people in his determination to live life to his fullest ability. He accepted his disease but never gave up hope that he would walk again.

It was evident how much Joey was loved by the 500 plus people that attended his funeral services. Joey touched many lives and enriched the lives of all who knew him. Joey will be greatly missed. We should all take lessons from Joey to accept the circumstances in life that we cannot control and to choose to create life around all the positive things that are in our control. The 3rd Annual MMF Delaware Run for Strength 5k Overall Champion Trophy was designed in loving memory of Joseph Williams (March 13, 1983 – October 31, 2013).

2.) Leah-Kate Lounsbury crossed the finish line in 18:49 and claimed the Overall Female Gold Medal. She also finished in 11th place overall.

3.) The Saint Mark’s High School Track and Cross Country team received the champion trophy for the largest track/xc team in attendance.

4.) Saint Mark’s High School was awarded the overall team trophy for rallying the biggest 5k team. The Saint Mark’s Spartans united 74 members on their team.

After the awards ceremony, the participants had a special opportunity to meet 2019-2020 MMF National Ambassador, who represents The First State, Anne Marie Wilkinson. MMF Muscle Champion, Anne Marie Wilkinson, shared her testimony in living with Charcot-Marie-Tooth Disease (CMT). CMT is a disease categorized as a peripheral nerve disease. Peripheral nerve diseases cause altered sensations and movement. The sensory and motor nerves that connect the brain and spinal cord to the rest of the body are affected. This causes altered sensations, atrophy, contractures, and sometimes scoliosis. The disease affects 1 out of every 2,500 individuals and is also known as the most common inherited nerve disease.

MMF Muscle Champion, Anne Marie Wilkinson, shares her powerful testimony with hundreds of attendees.

MMF Muscle Champion, Anne Marie Wilkinson, shares her powerful testimony with hundreds of attendees.

Anne Marie made the decision to defy all odds in living with CMT. She continues to live a healthy lifestyle, teaches, travels the world, is an active member in the neuromuscular community, and is a graduate student at the University of Delaware. She is the true definition of a Muscle Movement Fdn. Muscle Champion!

After Anne Marie received a standing ovation following her story, David Deal of Big D’s BBQ and Deli and Pastor Ray Seemans of Troubadour Ministry presented a special donation to the MMF in front of MMF’s supporters! David Deal and Pastor Ray collectively worked to donate a power wheelchair to the MMF to enhance the strength and quality of life of a MMF Muscle Champion in need. A power wheelchair may serve as just one of the many alarming expenses that are attributable to living with muscle disease. Power wheelchairs may cost more than $10,000, which many insurance companies will not cover. MMF is thrilled to be able to change the life of a family in need, by way of David Deal and Pastor Ray Seemans’ donation. Learn more about ways to give to MMF. Click here!

David Deal (left) and Pastor Ray Seemans (right) donate a power wheelchair to the MMF.

David Deal (left) and Pastor Ray Seemans (right) donate a power wheelchair to the MMF.

Several families in the MMF Community helped present the total amount of contributions raised at the MMF Delaware Run for Strength 5k. Muscle Champions, Anne Marie Wilkinson, Roman Graham, Arun Singh, Reid and Mikey Lo Sapio, Natalie Dell’Oso, and Michael Smith held up the signs to display the total amount raised at this event!


Here is a brief biography of each Muscle Champion:

1.) Roman Graham - Roman is living with hypotonia. Hypotonia means low muscle tone. Roman was diagnosed with hypotonia at birth. Roman Graham joined the Muscle Movement Foundation in 2017. MMF has supported Roman with financial support to assist with genetic testing.

2.) Arun Singh - Arun is living with duchenne muscular dystrophy (DMD). DMD is a genetic disease that causes muscle degeneration and weakness in the body. DMD is inherited in an x-linked recessive pattern, which explains why the majority of individuals who are living with DMD are males. Statistically, individuals living with the disease lose their ability to walk between the ages of 8-18, depending upon the progression of the disease. Unfortunately, DMD keeps research centers at hold. The disease has no cure and is 100% fatal. Arun is a student at St. George’s Technical High School. He has successfully transitioned into a power wheelchair to sustain his autonomy and quality of life. Arun joined the MMF in 2018 attending our 2018 MMF Delaware Run for Strength 5k and serving as St. George’s Football Team’s Muscle Champion and Honorary Captain. He continues to raise awareness for MMF and inspire his fellow Muscle Champions to defy the odds in living with muscle disease.

3.) Reid and Mikey Lo Sapio - Reid and Mikey are also living with duchenne muscular dystrophy (DMD). DMD is a genetic disease that causes muscle degeneration and weakness throughout the body. Reid and Mikey are both involved in clinical trials and are still young enough to be able to walk. They have seen significant progress since becoming involved in clinical trials and remain optimistic for life-changing treatments that will prolong their life. Reid and Mikey joined the MMF in 2017 through the MMF’s Charity of Champion Program. They served as Salesianum Cross Country Team’s Muscle Champions and Honorary Captains. MMF is allocating close to $4,000 to integrate handicap accessible accommodations in the Lo Sapio’s home!

4.) Natalie Dell’Oso - Natalie is living with spinal muscular atrophy (SMA). SMA is a genetic disease that is categorized as a motor neuron disease. Motor neuron diseases cause muscles to become weak due to nerve cells progressively losing their function. SMA primarily affects the upper back, thighs, hips, and shoulders. Natalie is the President of the Muscle Movement Foundation at Charter School of Wilmington - a school club at Charter School of Wilmington that combats neuromuscular disease and provides an applied learning experience for students in a variety of educational fields.

5.) Michael Smith - Michael is living with duchenne muscular dystrophy (DMD). DMD is categorized as a muscular dystrophy. DMD is a genetic disease that causes muscle degeneration and weakness throughout the body. Michael has served as the MMF National Ambassador in The First State in 2017-2018. He has joined the Wilmington University Wildcat Baseball Team by way of the MMF’s Charity of Champions Program. MMF is raising funds to assist Michael with a wheelchair accessible automobile. Michael is also starting a MMF Club at WilmU. He will be the President of the Muscle Movement Foundation at Wilmington University next fall!

Each Muscle Champion displayed one number at a time. MMF Muscle Champion, Anne Marie Wilkinson, displayed the final number, which was the number 2. By way of the Muscle Movement Foundation’s business sponsors, registrants, families, and friends, a total of $22,325 was raised at the 3rd Annual MMF Delaware Run for Strength 5k!

(left to right) Muscle Champions, Anne Marie Wilkinson, Roman Graham, Arun Singh, Mikey and Reid Lo Sapio and MMF Founder Rob DeMasi and Dr. Mena Scavina from AI duPont Hospital for Children, Natalie Dell’Oso, and Michael Smith! By way of the MMF and their supporters, $22,325 was raised to provide life-changing accommodations to families who are affected by neuromuscular disease.

(left to right) Muscle Champions, Anne Marie Wilkinson, Roman Graham, Arun Singh, Mikey and Reid Lo Sapio and MMF Founder Rob DeMasi and Dr. Mena Scavina from AI duPont Hospital for Children, Natalie Dell’Oso, and Michael Smith! By way of the MMF and their supporters, $22,325 was raised to provide life-changing accommodations to families who are affected by neuromuscular disease.

Donations from this event will provide life-changing physical, financial, and emotional accommodations to families who are affected by neuromuscular diseases in the state of Delaware. It takes a team effort to fight muscle disease…And MMF’s Team in The First State is STRONG!

Thank you to all supporters, donors, and volunteers for making our 3rd Annual MMF Delaware Run for Strength 5k a success - So families who are affected by muscle disease can LIVE LIFE STRONGER!


CLICK HERE TO VISIT OUR FACEBOOK EVENT PAGE AND VIEW ALL PHOTOS FROM THE EVENT


Would you like to continue to make an impact for MMF?

1.) Register for the Bear Retro Fitness 5k. Bear Retro Fitness has selected the MMF as the beneficiary of their 5k on 5/19/19. Click here to learn more, register, and/or donate.

2.) You can create a MMF page and fundraise in your own unique way! Create a school club, dedicate your athletic performance to the fight against muscle disease, host an event to benefit MMF at your work. The ideas are limitless! Click here

3.) Show your MMF Pride wherever you drive and purchase a MMF Delaware Specialty License Plate! YES this is a real license plate for the back of your vehicle! Select a number, mail us an application, and replace your old license plate with THE STRONGEST PLATE in the First State! It’s that easy! Click here

Submit Your Testimony!

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Please note, by submitting a testimony you are automatically providing MMF permission to publicize your testimony.

© Muscle Movement Foundation | www.MuscleMovementFoundation.org

Muscle Movement Fdn. | Specialty License Plate

MUSCLE MOVEMENT FOUNDATION SPECIALTY PLATE IN THE FIRST STATE

DELAWAREANS PLAN TO RAISE AWARENESS FOR MUSCLE DISEASE WHEREVER THEY DRIVE

DELAWARE - Show your Muscle Movement Foundation pride wherever you drive - and support individuals who are affected by ALS, muscular dystrophy, and additional forms of neuromuscular disease – when you purchase a MMF Specialty License Plate! All proceeds will provide physical, financial, and emotional accommodations to families who are affected by muscle-debilitating diseases!

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FOLLOW THESE 4 STEPS TO ADD ONE TO YOUR VEHICLE:

  1. First, we need at least 200 applications!

    When we get close to 200 applications, the Delaware Division of Motor Vehicles will allow us to create our MMF plate. The plate will include the MMF logo, the prefix “MMF”, and a number of your choice! You may select what number you would like. For example, the first 200 plates will have: MMF 1, MMF 2, MMF 3, etc.. A specific license plate number can only be used once. Click here to view the numbers already used.

  2. Make a one-time minimum donation of $40 to the Muscle Movement Foundation at the link below to provide physical, financial, and emotional accommodations to families in need.

    MMF is an IRS-registered 501(c)(3) organization. Donations are recognized as tax-deductible. ID #: 46-0554462. Your tax-deductible donation qualifies you for one MMF Specialty License Plate. No additional fees will apply! Make your donation today and help provide life-changing accommodations to families affected by muscle disease. Click here!

  3. Complete the Specialty License Plate application form. 
    Once you have submitted your donation, you will receive an email receipt containing the Specialty License Plate application form. Please allow 72 hours for MMF to email you a form. If you do not receive a form within 72 hours, email info@musclemovementfoundation.org. Complete the form as soon as possible and mail it to the following address:

    651 Valley Rd., #673, Hockessin, DE 19707

    After MMF receives 200 forms, all of the forms will be submitted together to Delaware's Division of Motor Vehicles for processing.

  4. Receive your new Specialty License Plate and show your MMF pride everywhere you drive! 
    The MMF Specialty License Plate will be mailed to the address on your vehicle’s registration.


Reminders:

  • Click here to view numbers that are already taken. This list is updated on a monthly basis; therefore, you may be asked to make a second selection in the event a number is on hold for processing.

  • Your donation is non-refundable. MMF will continue to collect donations and applications until we reach 200 applicants.

  • MMF cannot provide an estimated time of arrival for your license plate. MMF needs a minimum of 200 applicants in order for the Delaware Division of Motor Vehicle to approve our specialty plate.

  • The MMF Delaware Specialty License Plate will be mailed to the address on your vehicle’s registration, and it can only be mailed after MMF receives a minimum of 200 applications. (Please be patient as we are gathering applications, and feel free to contact info@musclemovementfoundation.org to check the progress of our applicant list).

  • In order to be added to our list of applicants, you must make a one time donation of $40 AND mail a Speciality License Plate application to the Muscle Movement Foundation's address: 651 Valley Rd., #673, Hockessin, DE 19707. After you make a donation to this page, the MMF will email you the Specialty Application Form within 72 hours.

  • In order for the MMF Delaware Specialty License Plate to be approved by the Delaware Division of Motor Vehicles a minimum of 200 applications must be submitted.

  • MMF’s Specialty License Plates are currently available only to Delaware residents.

© Muscle Movement Foundation | www.MuscleMovementFoundation.org

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!

© Muscle Movement Foundation | 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!

© Muscle Movement Foundation | 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!

© 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!

© 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!

© Muscle Movement Foundation | www.MuscleMovementFoundation.org