We are an association registered in Denmark on the 9th January 2021. The aim of this association is to raise funds to cover treatment for Ayah Mithika Lundt.
Our mission is urgent; we need to raise 15 million DKK for Ayah, a fourteen month old girl living in Bornholm, to get brand new treatment Zolgensma.
Ayah suffers from Spinal Muscular Atrophy (SMA) which depletes her muscle, affecting the motoric functions as well as her inner organs. The current treatment she is receiving is a life time treatment injected through the spine. The treatment only contains the disease and does not stop the degeneration of her muscles.
If she receives the new treatment, which is a one-time gene therapy, it will stop the depletion of her muscles and give her a chance to be an independent girl not restricted to a wheelchair.
Ayah needs the medicine before she turns two years old in January 2022.
The foundation is registered by Mary and Frank Lundt, who are currently working with a group of well-wishers to raise the necessary funds for baby Ayah. The campaign runs from 10th January 2021 to 9th January 2022.
All donations go entirely to Ayah’s treatment through the Foundation. There are no administrative expenses as everyone in the team works on volunteer basis.
Access to the treatment
Our vision is to ensure that children with SMA get access to this new gene therapy that can help them live a normal life. Right now the treatment is only approved in a few countries. Denmark Medicine council is in the process of determining whether this gene therapy will be available in Denmark.
Create awareness on SMA
SMA is the second most common fatal autosomal recessive disorder after cystic fibrosis. Although a rare disease, affecting 1 in every 10,000 live births, there are around 26 children in Denmark without access to the life changing treatment.
Advocate testing for SMA on newborns
When detected before the symptoms appear, a child has a chance to receive treatment and live a normal life. You can find more information about Ayah’s story here.
Built with Mobirise maker