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Help Us Cure FSHD!

Michael Penwell

Michael Penwell

The money I'm raising by participating in this Walk & Roll is supporting programs and funding research that will directly affect patients living with FSH Muscular Dystrophy (FSHD) and their families.

Facioscapulohumeral muscular dystrophy, or FSHD, is a genetic disorder that leads to the weakening of skeletal muscles. It affects an estimated 1 in 8,000 individuals or nearly 1 million people worldwide. Early-onset FSHD has shown to be a more severe course of the disorder with many individuals needing to use a wheelchair starting in their early adult years. Many individuals experience debilitating pain and fatigue. There is no effective treatment or cure—but there is hope.

Thank you for your support! - Michael

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OUR FAMILY'S FSHD STORY

For our family, FSHD hits close to home. In the fall of 2012, our daughter Alexa was excited to be playing soccer for both her club team and for her middle school team. During that season she started to have difficulties keeping up with training. She was mentally strong and worked hard at every training and game. Despite this effort, she found it harder and harder to keep up. Her body was simply not responding well.

As her struggles grew, we started down a path that's all too familiar to those who have family members with rare medical disorders. Doctor visit after doctor visit being passed from one specialist to another to another and so on. Over the next six months, Alexa went from her general practitioner to a physical therapist to an orthopedist, to a neurologist, to another neurologist and so on. Her journey to diagnosis culminated at the Levine Children's Hospital in Charlotte. A pediatric neurologist, Dr. Amy Harper, gave Alexa a clinical diagnosis of facioscapulohumeral muscular dystrophy within minutes of reviewing her chart and visiting with Alexa. It is truly amazing when you find that specialist who can tell you what is going on.

Unfortunately, the diagnosis of FSHD was not good news. I clearly remember the words that Dr. Harper spoke: "There are currently no treatments and no cure." Talk about a statement that takes your breath away.

The next year was spent learning all we could about FSHD and helping Alexa adjust to this life-changing genetic disorder. One of the first things we learned is that people with FSHD often report experiencing periods of rapid physical decline followed by a plateau in physical abilities. These plateaus may last several years with minimal physical change. Looking back, we could see that Alexa had experienced one of these periods of rapid physical decline. In the fall of 2012 she was playing competitive soccer and by the middle of the following spring season, she was unable to run without falling down. Her days of playing soccer were over in a flash. Soccer had been a large part of her social identity and it was crushing to have that taken away.

FSHD also has taken more than a sport from Alexa, it has taken away her smile. Now I don't mean that she is sad and depressed, but literally, it has taken away her smile. The "facio" in FSHD refers to the face. The muscles in the face are some of the earliest impacted muscles in FSHD. For Alexa, the muscles on the left side of her face have lost strength to the point where she can't give you a "toothy" smile. She has mastered the closed-lip, "smile with my eyes look". If you scan the photos at the top of the page, you will see this look in many of the pictures.

So, fast forward a couple years. Alexa has made great progress in adjusting to her new physical reality. Her twin sister Taylor has been a tremendous support system for her. We had discussed with Taylor many times the likelihood that she also has this genetic condition even though symptoms had yet to surface for her. At the age of 16, Taylor decided that for her peace of mind she wanted to be genetically tested for FSHD and shortly thereafter she was also genetically confirmed as having FSHD. As of today, she is still relatively symptom-free for which we are truly grateful.

I could go on as this disorder has impacted our family in countless ways. If you would like to know more about our FHSD story, please reach out to me. I'm happy to discuss our experience in more detail.

To close, I want to talk briefly about the significance of the Futbol Club of Cary in our family. Soccer has been all about family for us. I have coached, my girls have played and Melissa has done everything from team manager to assistant coach and more. With Alexa's drastic physical changes taking playing away from her our whole interaction with the sport took on a new and often uncomfortable feel. What had once been only joy and happiness suddenly had a huge element of sadness attached to it. In June 2015, Chris and Stephanie Barefoot approached Melissa and me about joining FC Cary as the Director of Operations. We jumped at this opportunity as we've truly loved being part of the FC Cary community. This also presented an opportunity for our family to positively engage again with the sport. Alexa and Taylor have taken on multiple roles within the club including sponsorship acquisition, referee scheduling and administration, field preparation and much more. In many ways, FC Cary has helped put the joy back into our family's involvement with soccer and for that, we are tremendously grateful.

If you would like to join our FC Cary team for this walk, visit https://fshsociety.rallybound.org/NCWalkandRoll/fccary

Again, thank you for your support! - Michael

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LEARN MORE ABOUT THE FSH SOCIETY

The FSH Society is a Charity Navigator Four Star Charity and has consistently been recognized as an excellent charitable organization. I encourage you to visit the FSH Society website (fshsociety.org) to learn more about FSHD, ways to get involved, and everything that is happening!

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$2,576
raised of $2,500 goal
 

Recent Donations

1. JEJohnathan Eshleman
2. CJCliff Jones
3. jhJohn Humphrey
$100.00
4. LLLenny Lynch
$100.00
5. DPDavid Penwell
$50.00
6. RLRobert Lovelace
Captain

Team Futbol Club of Cary

$6,147
$5,000