Fight SMA Annual Conference 2005
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The FightSMA Annual Meeting in April of 2005 was a tremendous success. Families convened with old friends and met some new faces. Most importantly, the parents strengthened their bond of fellowship and the children made new friends.
Researchers from around the world discussed the strengths and pitfalls of each study and carved out next steps in the world of clinical trials and drug discovery. (Click here to for lay summaries of the researcher presentations.) FightSMA chapters can be proud to know that we are open to and actively pursuing participation in the funding of all clinical networks in the continental United States and Canada. We can be optimistic about what these trials will teach us. We are engaged in a process. It is important to be patient and to realize that the truly significant compound/compounds are yet to be discovered. And, this is why we work. We work to fund the research that will render the most efficient and promising compounds.
FightSMA chapters welcomed friends from the SMA Coalition and invaded Capitol Hill. It is heartening that the war is fought on many fronts. Within NIH, the SMA Project through NINDS has been secured and we are pursuing (relentlessly) funding from NICHD. We have friends in our lawmakers. They helped us make critical inroads at NINDS and they will come to our aid in our collective and individual appeals to NICHD. Our cause is further enforced by Chief Deputy Whip, Eric Cantor’s pledge of support and his gracious hosting of the FightSMA reception on Capitol Hill.
The Annual Meeting was an accomplishment by all measure in terms of research direction and camaraderie. We are united in our fidelity to one another and our common mission to bring SMA to its knees.
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