Ashley and Michael Sanchez wrote -
Team Footsteps for Finley benefitting Cure CMD will again be the official charity of the Boilermaker 3 Mile Walk of 2016 on July 9th. We will be raising awareness and funds to help support Cure CMDs mission to find treatments and one day a Cure for Congenital Muscular Dystrophy. More specifically every dollar raised from our little team will go directly to Finley's type of CMD, LAMA2 (Merosin Deficient CMD). Since the beginning of 2013, when Finn was diagnosed, we have tried and quite frankly done well at raising money to help fund current studies and trails. But as you can imagine with such a rare disease money is always needed to keep searching for a cure and helping those children and adults with Congenital Muscular Dystrophy.
Not only do we have family and friends walking but we'll have many runners for the big events, the Boilermaker 5k and 15k on July 10th, 2016. Therefore anyone can realistically participate, whether it be by donating, volunteering, walking or running- we would love for you to join our efforts!! ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Our son Finley was diagnosed with a rare form of congenital muscular dystrophy called CMD LAMA2, or merosin-deficient CMD. There is currently no cure or treatment for this disease. Most of the children with this condition will never walk and are faced with tremendous health challenges, as even a simple cough or runny nose can turn into a serious lung infection requiring hospitalization. The lifespan of children with this disease is greatly shortened due to respiratory distress and most children do not live past young adulthood.
Finley may never run, jump, or dance like we all did as children. These kids struggle to lift their heads, bear weight on their arms and legs and most must navigate their lives from the confines of a wheelchair. All of that said, there is significant hope in the medical community that treatments are within reach.
So on July 9th we will be Finley's legs and he will fill our hearts. As the official charity of the Boilermaker walk of 2016, Footsteps for Finley and Cure CMD will be creating a team as an effort to find a cure for CMD! 100% of the contributions raised for Cure CMD will be used to fund research. Thank you for reading our story and supporting our cause, every thought, prayer, and dollar takes us one step closer to a cure. ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
TO DEVELOP TREATMENTS, AND EVENTUALLY A CURE FOR THE CONGENITAL MUSCULAR DYSTROPHIES.
A group of diseases causing muscle weakness at birth. Several defined genetic mutations cause muscles to break down faster than they can repair or grow. A child with CMD may have various neurological or physical impairments. Some children never gain the ability to walk, while others lose the ability as they grow older.
Cure CMD is the only non-profit focused solely upon finding treatments, improving the medical management and raising awareness for the CMDs. Every dollar that is contributed truly makes a difference in funding research and studies, and your contribution will be a big part of our initiatives this year.
The good news: in the last year Cure CMD has fielded an increasing number of calls from the pharmaceutical and venture capital sector who are interested in the CMDs. Ultra-orphan diseases are coming into the limelight; however it will take all of our individual efforts to push these initiatives forward.
Simply put: we will not stop until we identify interventions and treatments that improve the health and survival of those with CMD. Thank you for supporting our children.