(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 clinical study could start end of last year and brings hope for the affected children.
Can I help?
Yes, you can! A lot of financial support is required to push studies through the various research steps. The funding is required to help save the patients. Any donation helps to win this fight against time.
stories of SMARD-kids
Little Jule was born in Hamburg, Germany, and will soon celebrate her eighth birthday.
She has been suffering from SMARD all her life. The disease is already
paralysing her muscles. Mudi is three years 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 research on combating SMARD.
Become a donor today!
We will happily provide you with a tax receipt.
SMASHSMARD Deutschland e.V.
IBAN: DE37 2005 0550 1500 3591 85