About Casey...
Casey has a rare form of muscular dystrophy called Hereditary Myopathy with Early Respiratory Failure or HMERF for short.
HMERF is a progressively debilitating disease caused by progressive weakness
and muscle wasting across the legs, hips and respiratory tract.
This means that she will progress from
using a Wheelchair to being bedridden and in terrible pain.
Who is Casey ? Do you wonder if your gift will make a difference?
Those are really good questions. Let's answer them for you.
Who is Casey?
Casey is a pulmonary nurse in the Wellstar West Georgia System. She was diagnosed at age 35, and will ultimately use a wheelchair only to become bedridden and on a ventilator to live out her life...
And yes, research is a very expensive proposition... which is why we have networked with other organizations who are looking for similar answers and we have pooled our donations in order to make a more sizable grant to the researcher. Researchers like more money....:)
Will your gift matter?
Well, believe it or not, previous donations have already made a difference in the body of science surrounding muscular dystrophy. Dr. Lindqvist at the Arizona Medical School research lab, is currently working with Casey's cells and has found something 'unexpected'-- that's science speak for something he hasn't seen before, which is why your continuing contribuitons are needed.
Your gift... could very well fund the idea that shows significant proof of viability that catches the eye of the pharma or NIH project that will fund the millions of dollars this research takes...
Donations from our foundation and others is going to push this research over the edge-- it could very well be yours... You could be the change for Casey and others in your own lifetime!
Your gift will go to the researchers who are currently working on Casey's tissues. THAT... is a very big deal. Not many patients make a tissue donation that gets picked up by a leading Medical School Research program- - But Casey's has!
Your gift will support the research that is searching to stop the progression of Casey's muscular dystrophy.
And what he finds out will benefit society at large. (There are 250,000 people diagnosed with some form of muscular dystrophy every single year.)
But don't you need LOTS of $$$? How can this donation help?
Like we've said, research is a very expensive proposition...which is why we have networked with other organizations who are looking for similar answers and we have pooled our donations in order to make a more sizable grant to the researcher. More money means more time spent on her cells to find out how to stop the progression of her disease.
But your gift... could very well fund the idea that shows significant proof of viability that catches the eye of the pharma or NIH project that will fund the millions of dollars this research takes...
Somebody's money going is going to push this research over the edge-- it could be yours...
You can help save my daughter's life... Will you help her?
When you give, you save sons, daughters, grandsons, and grandchildren... the science is almost there and this is within reach, but your support is needed. Yes, HMERF is a rare disease, but there are INCREDIBLE patient groups in the US and globally who have been in this fight for decades... and the breakthroughs we're seeing today are happening BECAUSE of them... because they funded that early research, so many years ago, which is finally bearing fruit...
Your gift makes a difference you will see in your lifetime; your money provides the collaboration to end the genetic killer of hundreds of family members today and in the years to come.
Will you help her?
When you give...
You Stand Up for Rare Disease Patient Research
Your money goes to researchers and projects that forward the understanding and development of treatment and cures for patients with rare diseases.
Your gift saves lives... please give now...
When you give...
You work to pass legislation that protects patients with rare diseases and gives them a chance for the life we all deserve to live.
Contact your state and federal legislatures and urge them to support bills that protect and accelerate the finding of treatments for the rare disease community. Your voice matters!
When you give...
You give a voice to rare disease patients on Capitol Hill each year in collaboration with EveryLife, RDLA, CureCMD Team TITIN and others. By pooling our resources with others with similar goals we create a powerhouse of support that moves the research along finding solutions quicker- - saving lives.
Thank you to our 2022 Sponsors!
HIllside Montessori School, LaGrange, GA (2022)
Laura Kate Rambo, LaGrange, GA (2022)
Lee Morgan, JetPolymer Recycling (2021, 2022)