'Light the Miracle' to cure Anna

Team fundraiser

Marco Schmid and Natascha Schmid are organizing this fundraiser.

Donation protected

We need your help to Light the Miracle for our daughter Anna & all Pitt-Hopkins affected children!

Imagine a sunny child that is caged up in her own body. She wants to do all by herself, simply walk, express herself and communicate with others having just an ordinary childhood like most kids around the world. But there is a limit with a bunch of physical symptoms and behavioural patterns from vision impairment, global developmental delay, seizures to anxiety and hyperactivity. Livelong dependent. No free will or self-determination. No cure yet. That's Pitt-Hopkins Syndrome.

As parents of Anna, we promised to do all to get a cure and treatments for her and beyond. Since diagnosis mid of August 2022, we are giving all to make it real. Both, being already entrepreneurs in MedTech, researched and learnt on full-time basis about drug discovery and repurposing technologies, talked to hundreds of experts, affected families and finally found partners in biomed community who have know-how and experience to participate in the development of a treatment with a therapeutic-peptide based approach.

A big thank you to all our friends and colleagues all over the world for your support and hope that you gave us during this year. But now it’s time to push the execution phase forward. We need your help!

We have our ‘Tree of Hope’ and together we can Light the Miracle and make the stars glowing for Anna! Let’s make them shine as bright as possible to get big funkling in her eyes and once all Pitt-Hopkins children will be able to do their own wishes to Christkind or Santa. Give them back their childhood, a perspective for life and create a basis for self-determination! The sky is the limit.

Time counts. The earlier the wrong expression in the mutated gene is regulated to normality, the better the outcome will be and help Anna and companions in fate.

Beyond the treatment we are paying attention on two other pillars of success:

• Early diagnostics: Promote early detection of syndrome what will lead to early intervention plans. Time matters.

• Rehabilitation therapies: With implementation of effective developmental therapies outcomes will get better.

With the raised money we will set up a non-profit foundation in Europe to harmonize the actions and speed up finding a drug. All in direct collaboration with the American Pitt-Hopkins Research Foundation. Making together a global treatment reality!

Pitt-Hopkins syndrome (PTHS) is an ultra-rare genetic disorder affecting at least 1,286 people worldwide. We know less than 10 individuals with the same de novo single point mutation as Anna has. PTHS is caused by a mutation in the TCF4 gene, which impairs TCF4 protein function, causing a number of negative downstream effects.

Community, we need your help!

The money collected will be used entirely to establish the European charitable foundation Cure Anna, which has the following purpose:

1. Drug Treatments: Develop drug treatments for rare genetic diseases, with primary target Pitt-Hopkins Syndrome

2. Intense Therapies: Establish and support therapies and institutions for syndromatic children. Focus on abilities not disabilities

3. Early Diagnostics: Make early diagnostics and interventions accessible

4. Support for existing Pitt-Hopkins initiatives and affected Families in need

This is a long term project, where we build a non-profit accellerator to speed up helping Anna and beyond. With this non-profit foundation we will be able to raise grants from public funding programs, global charities and wealthy donors, to use it directly on the specific purpose.

The first stage of the drug development process for a therapeutic-peptide drug has costs of CHF 250'000. This allows to do the so called 'in vitro' testings to get the drug to the next level of development and help Anna and all children in fate.

With your donation we get the needed wind below the wings and will lift off to new horizons. Together for a future, where treatments for rare genetic diseases are reality!

'Light the Miracle' with us and make for Anna and all Pitt-Hopkins children the stars funkling.

THANK YOU!