Help Becky support ALS research & her family
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My sister, Becky Clodfelter, is one in a million. She is the kindest, most generous, and most gifted person I know, and she spreads joy wherever she goes, including through her decades of work as an artist. Becky’s beautiful canvases and murals grace walls across North Carolina and beyond. Becky is also mom to my incredible nephew Jack, 16, who is an artist in his own right, as well as an amazing athlete and all-around awesome person.
Becky is also rare in a different, disastrous way.
In summer 2019, Becky noticed that something felt different about her speech, and she also felt as though all of her muscles were buzzing with some kind of strange energy. Through the fall, Becky had scores of tests, and that winter her doctors confirmed the worst possible diagnosis: ALS (Amyotrophic Lateral Sclerosis).
ALS is the most brutal disease imaginable. As it destroys motor neurons in the brain and spinal cord, it gradually steals the capacity of the muscles that control speech, movement, swallowing, and ultimately breathing. Since ALS impacts a relatively small number of people – less than 0.005 of the US population – research is underfunded. But individuals are giving in large and small amounts to move it forward, and physicians and researchers are devoting their lives to crushing this disease. Right now, slowing the progress of the disease is crucial to giving Becky and ALS patients everywhere time for this research to come to fruition. It’s grassroots campaigns like this one that are achieving that.
Some of the most exciting potential lies in the work of an extraordinary group of physicians that includes Becky's doctors, Richard Bedlack at Duke University, and James Berry and his colleagues at the Massachusetts General Hospital. Just last September, the MGH researchers published the results of the Phase 2/3 CENTAUR trial of AMX0035 (a combination of sodium phenylbutyrate and taurursodiol). The treatment shows remarkable promise. The components of AMX0035 are available, but one of them, sodium phenylbutyrate, costs $1,500-$4000 per month.
That’s why I, along with Becky and all of her warriors, aim to raise funds to support the following:
The Healey Center for ALS and Dr. James Berry, for continuing research
The Duke ALS Clinic and Dr. Richard Bedlack, to fund a specific grant
Becky’s experimental medicine and travel to MGH for care
The world needs Becky. She makes it a better place. But the world also needs to conquer this disease. Please help Becky do that by supporting and forwarding this campaign!
With heartfelt thanks,
Gretchen Lang
Becky is also rare in a different, disastrous way.
In summer 2019, Becky noticed that something felt different about her speech, and she also felt as though all of her muscles were buzzing with some kind of strange energy. Through the fall, Becky had scores of tests, and that winter her doctors confirmed the worst possible diagnosis: ALS (Amyotrophic Lateral Sclerosis).
ALS is the most brutal disease imaginable. As it destroys motor neurons in the brain and spinal cord, it gradually steals the capacity of the muscles that control speech, movement, swallowing, and ultimately breathing. Since ALS impacts a relatively small number of people – less than 0.005 of the US population – research is underfunded. But individuals are giving in large and small amounts to move it forward, and physicians and researchers are devoting their lives to crushing this disease. Right now, slowing the progress of the disease is crucial to giving Becky and ALS patients everywhere time for this research to come to fruition. It’s grassroots campaigns like this one that are achieving that.
Some of the most exciting potential lies in the work of an extraordinary group of physicians that includes Becky's doctors, Richard Bedlack at Duke University, and James Berry and his colleagues at the Massachusetts General Hospital. Just last September, the MGH researchers published the results of the Phase 2/3 CENTAUR trial of AMX0035 (a combination of sodium phenylbutyrate and taurursodiol). The treatment shows remarkable promise. The components of AMX0035 are available, but one of them, sodium phenylbutyrate, costs $1,500-$4000 per month.
That’s why I, along with Becky and all of her warriors, aim to raise funds to support the following:
The Healey Center for ALS and Dr. James Berry, for continuing research
The Duke ALS Clinic and Dr. Richard Bedlack, to fund a specific grant
Becky’s experimental medicine and travel to MGH for care
The world needs Becky. She makes it a better place. But the world also needs to conquer this disease. Please help Becky do that by supporting and forwarding this campaign!
With heartfelt thanks,
Gretchen Lang
Co-organizers (2)
Andrea Crossley Spencer
Organizer
Greensboro, NC
Jim Clodfelter
Beneficiary
Gretchen Lang
Co-organizer