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.

Donate now!

SMARD

(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

BIC: HASPDEHHXXX

 

Studies would not only be a godsend for these kids and all others suffering from SMARD. Furthermore, a succesfull study would be a giant leap for gene therapy as a whole and could also impact the cure of other genetic defects.

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SMASHSMARD Deutschland e.V.

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View more information about SMARD

SMARD is a very rare congenital defect on the IGHMBP2 gene. This genetic defect leads to the nerve disease called Spinal Muscular Atrophy with Respiratory Distress, where an important protein is not formed correctly, which causes nerve cells not to be properly supplied. Impulses from the brain do not sufficiently reach the muscles throughout the body which causes the muscles to retract. This also affects the diaphragm and therefore the ability to breathe.