About Fight SMA

 
 
FightSMA Canada
Fight SMA Canada is a volunteer-run, non-profit organization, set up in 2000 by Tracy and Shawn Lacey. The charity was initially named “Tori’s Buddies”, after Tracy’s four year old daughter Tori, who has SMA.
 
The foundation is a registered Canadian charity which is 100% volunteer driven. The money raised by FightSMA Canada goes directly towards accelerating the research to find a cure or treatment and to help the families that have been devastated by this disease.
 
“FightSMA gives us hope and faith that something is being done to find a cure. It gives us comfort in knowing that as parents we are doing everything possible to help our daughter and all of the people affected with SMA.”
Tracy Lacey – President, FightSMA Canada
 
The Mission of FightSMA
FightSMA was created to accelerate the search for a treatment and cure for spinal muscular atrophy (SMA), the number-one inherited cause of infant death. The organization pursues this objective by raising awareness and funding for SMA research.
 
The Story of FightSMA
Since its creation in 1991, FightSMA has worked to bring higher levels of awareness and understanding of spinal muscular atrophy (SMA). It began its crusade with a successful 30-day campaign to raise $100,000 to supply researchers with vital gene-search equipment.
 
In the years since, FightSMA has funded SMA researchers at numerous academic institutions and biotech corporations in Canada, the United States, the United Kingdom, France, and Italy. The group has been involved since the initial (and successful) search for the gene that causes SMA to the more recent efforts to identify compounds which can compensate for the faulty gene and, ultimately, provide treatment for the disease.
 
Much of the organization’s success is due to a strong network of energetic and committed Chapters located across the United States and in Canada. These chapters organize fundraising campaigns and events and work to bring attention to SMA in numerous communities. In addition to the FightSMA chapters, there are families and supporters in other communities who work in fundraising and awareness-building capacities.
 
An Informed and Focused Strategy
FightSMA works intimately with leading SMA scientists from around the world, helping to articulate and support a focused research strategy. That strategy identifies the most promising SMA research opportunities, coordinates the efforts of numerous laboratories, and makes the most effective use possible of precious financial resources.
 
It is the fervent hope of all children fighting SMA and of the parents, families, and friends of those children that more individuals will learn of this fight and support it with all the financial assistance they possibly can. It is a worthy and noble fight. And a victory is near.
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