Help us save Muk!

Muk is a cheerful, strong-willed and sensitive five-year-old girl. She has Sanfilippo type A (MPS IIIA), also known as childhood dementia. This rare, progressive metabolic disease prevents her body from properly breaking down certain substances. They build up, especially in the brain, causing Muk to gradually lose skills and abilities.

The FDA has approved FAYUVI, formerly UX111, for Sanfilippo type A. We do not yet know the combined cost of Muk’s treatment, medical preparation, travel and accommodation. That is why we are continuing to raise funds: we want to be ready to act as soon as treatment becomes possible for Muk. Every donation still matters.

FAYUVI is a one-time gene therapy given through an infusion. The treatment delivers a working copy of a gene into the body, enabling cells to produce the enzyme missing in Sanfilippo type A. That enzyme helps break down harmful substances. In this way, the treatment addresses the cause of the disease. Read more about FAYUVI (UX111).

In children who were treated early, research showed that important skills were maintained and continued to develop. Comparable children without treatment lost skills. Doctors assess whether FAYUVI is suitable for each child. For Muk, we are in contact with a treatment centre in America, gathering her complete medical records and preparing a blood test for antibodies to AAV9.

Sanfilippo is progressive, and existing damage does not reverse itself. Approval does not mean Muk can be treated immediately. That is why we are now working on her medical preparation and continuing to raise funds. We want to avoid losing precious time once treatment becomes possible for Muk.

The original milestone of one million euros has been reached, thanks to everyone who gave and organised fundraising activities. The total cost of Muk’s treatment and the steps around it has not yet been established. That is why we are continuing to raise funds for treatment, medical preparation, travel and accommodation. As more becomes clear, we will share it on this website and Instagram.

If FAYUVI does not become available or proves medically unsuitable for Muk, donations remain under Stichting Muk’s management. The board may only spend the funds within the foundation’s purposes as set out in its statutes, for example on another medically suitable treatment, essential care or support for Muk, or activities relating to childhood dementia and Sanfilippo. We will explain any significant change in how the funds are used as specifically as possible on this website. Money is not automatically transferred to another foundation.

The million has already been reached, but we do not yet know the cost of Muk’s complete treatment journey. That is why we are continuing to raise funds. As the costs and options become clearer, we will share what is needed and how the donations received will help. We are also exploring other funding options.

Donations are managed by Stichting Muk tegen Kinderdementie and may only be spent within its purposes as set out in its statutes. The first priority is to make a medically suitable treatment and the complete journey around it possible for Muk. This may also include necessary medical preparation, travel, accommodation, guidance, care and support. The foundation communicates transparently about significant changes.

The current total is shown on the homepage and donation page of this website. It changes regularly with new online donations, bank transfers and fundraising activities. That is why we do not give a fixed amount here that would quickly become out of date.

Go to the donation page to donate online through iDEAL, Bancontact, credit card, Apple Pay or PayPal. You can also make a direct bank transfer to NL81 RABO 0161 5260 04, account name Stichting Muk tegen Kinderdementie.

For a one-time online donation, we only ask for the details needed for payment and confirmation. We do not ask for an address or phone number if they are not needed. Our privacy policy explains which data are processed and how long they are kept.

Your name does not have to be made public. An electronic payment is not fully anonymous to the bank or payment provider, and the foundation may receive transaction details needed for its records.

Yes. Businesses can support Muk with a donation, fundraising activity, sponsorship or by sharing her story. A bank limit may apply to large amounts; a bank transfer is often simpler in that case. For personal contact or questions, email steun@stichtingmuk.nl.

Yes, absolutely. Sharing Muk’s story through Instagram, Facebook, WhatsApp or LinkedIn may reach someone who can donate, help or share it again. You can also organise a fundraiser, approach a business or tell others why every day matters for Muk.

Muk’s greatest chance lies in reaching as many people as possible. A single share can bring her story to someone who can make a difference. Social media also help keep donors and supporters informed about fundraising and important developments.

Stichting Muk tegen Kinderdementie and Stichting Sanfilippo Fonds are two separate legal entities, each with its own board, records, bank account and purpose. Stichting Muk focuses on Muk’s future. Stichting Sanfilippo Fonds has a broader purpose for children with Sanfilippo. Any contribution or transfer between the foundations is never automatic: it requires a separate, recorded board decision, and the spending must fit both foundations’ purposes. We communicate transparently about this.

Stichting Sanfilippo Fonds has held ANBI status since 30 October 2025 (RSIN 868618834). That status does not automatically apply to Stichting Muk. Through the donation form on this website, you donate to Stichting Muk tegen Kinderdementie (RSIN 868308778). Donations to Stichting Sanfilippo Fonds may be tax-deductible subject to conditions. View the ANBI details.

On Instagram, we share the latest steps, new developments and personal updates about Muk’s journey towards treatment in America. We also update important information on this website.