We’re seeking a cure for a rare disease –
Big Hearts wanted!
SMASHSMARD e.V. is an initiative to support medical research and awareness for the rare disease SMARD. Our aim is to make a cure a reality in order to give back a quality of life to the affected children.
(Spinal muscular atrophy with respiratory distress type 1)
is a nerve disease caused by a very rare genetic defect. It causes infants or toddlers to lose control of their muscles, ultimately suffering severe respiratory distress due to the paralysis of their diaphragm. Children usually only have a very short lifespan between six weeks and a few years. Until now, there is no cure for this disease.
Is there any hope?
Yes, there is! A team of researchers in the United States is working on a very promising project to develop a gene therapy. A subsequent study could already start next year and perhaps bring salvation for the affected children.
Can I help?
Yes, you can! A lot of financial support is required to push this study through the various research steps. Currently, the research team requires funding of 2.1 million US-dollars to bring the study to the next stage. Any donation helps to win this fight against time.
stories of SMARD-kids
Little Jule was born in Hamburg, Germany, and just celebrated her sixth birthday.
She has been suffering from SMARD all her life. The disease is already
paralysing her muscles. Mudi is one year old and since the beginning of his tiny life suffers severly. After times of despair, there is finally a glimmer
of hope for these kids and their families.
Together with SMASHSMARD USA (www.smashsmard.org), we are committed to promote the study on combating SMARD.
There are now only approx. 250.000 USD missing.
Become a donor today!
We will happily provide you with a tax receipt.
SMASHSMARD Deutschland e.V.
IBAN: DE37 2005 0550 1500 3591 85