Yaya Foundation Community Note
Yaya Community,
Since its founding over 6 years ago, the Yaya Foundation has been committed to both the innovation of research AND the support for patients and families. Over the past week there have been a variety of stories related to the future of NIH, including pause in funding and an evaluation of current projects, which will inform what the scope of the NIH will look like in the future.
The most common question I have received is, “will this disrupt the work we are doing?” That is a big question. On its own, the Yaya Foundation, or any rare foundation alike, does not have the financial capacity to independently fund large-scale research projects vital for therapies or a cure. Historically, we have been able to make transformative investments in research by funding pilot projects that equip laboratories for what they need to hire staff, build infrastructure and collect initial data, which then provides the institutions what is required for them to apply for the multi-million-dollar NIH grants to move their work forward.
This model has allowed the Foundation to invest nearly $500,000 in the beginning stages of mouse models, gene-therapy, biomarker studies, natural history, and more – most of which have been used to complete NIH applications to receive their institutional grants – without our initial investments their ability to receive the larger funding would be limited. In time, once the future of the NIH is determined, we will learn the implications of those decisions on this funding pathway. I will continue to keep the community informed as I learn more.
In the meantime, we are more committed than ever to continuing to build meaningful ways to offer support and service to our community. Over the course of the past year, I have worked with the Board of Directors, partners, rare groups, and advisors to build out viable programs that will equip the Yaya Foundation to expand its offerings beyond research. The areas of development include clinic engagement – providing you with more medical resource options to inquire about care, and a Yaya Medical Resource Fund, to provide financial resources or support options for families facing hardship related to patient care.
No matter the decisions made on the future of the NIH, the Yaya Foundation is committed to you and the well-being of our patient community.
The second most frequent question I have received is, “what do you need?” and “how can I help?” – our need is both vital and simple:
- We are currently amid a $1 million Yaya-Impact Campaign, of which we need to raise $750,000. This campaign could not be more timely or more important than the challenges we are currently facing. To fulfill our promise to our community it is imperative we hit this mark. I often hear that asking for money is uncomfortable, something many do not want to do, or they often forget. Know that you are heard, and two things remain true – asking for money can be intimidating/vulnerable AND without it, our options to show up and meet the moment are impacted:
- Consider your own capacity and the generous ways you can give, https://yayafoundation4hl.org/donate/
Yaya Foundation
5100 36th Street
#16404
St. Louis Park, MN 55416 - Share your passion (and need) for our work, the challenges we face, and encourage those in your personal or professional networks to join our cause.
- Host a fundraiser in your community
- Consider your own capacity and the generous ways you can give, https://yayafoundation4hl.org/donate/
- There are a variety of events being planned for the coming year, consider how you may participate: (more information to come)
- Yaya Foundation Family Gathering – Amsterdam, NL: May 22-25
- Yaya Summer Community Postcard Campaign: (mail) June – August 2025
- Yaya Foundation Soiree – Minneapolis, MN: September 26
- Yaya Foundation Family Gathering – Minneapolis, MN: September 25-28
- Inform. Continue to learn about what is happening across the landscape, stay close to the Foundation, families, practitioners, and others in your network – keep people informed about what you need, how you are doing and where you need support.
- We are currently amid a $1 million Yaya-Impact Campaign, of which we need to raise $750,000. This campaign could not be more timely or more important than the challenges we are currently facing. To fulfill our promise to our community it is imperative we hit this mark. I often hear that asking for money is uncomfortable, something many do not want to do, or they often forget. Know that you are heard, and two things remain true – asking for money can be intimidating/vulnerable AND without it, our options to show up and meet the moment are impacted:
Know that as a community we are one – patients, families, friends, donors, health providers, researchers – connected by our will to help people. The work, in whatever form, will continue if the Yaya Foundation is supported in doing so.
The opportunities to meet our community in their need is upon us – as a collective its about meeting the moment. Do not hesitate to reach out to me Ben Smith, Executive Director, Benafoundation4hl.org or Valerie Gregor, Director of Research, Valerie@yayafoundation4hl.org at any time.
Onward,
Ben Smith
Executive Director
Ben@yayafoundation4hl.org