Your support will change lives
We need to learn more about Myhre Syndrome so we can stop the progression of this ultra-rare condition.
Your donation will help us fund research, raise awareness, and give hope to the Myhre community. We are truly thankful.
Where Your Donations Go: Funding Critical Efforts at the Myhre Syndrome Foundation
At the Myhre Syndrome Foundation, every dollar you contribute is vital in advancing our mission to improve the lives of those affected by Myhre syndrome. Here are some examples of how your support makes a difference:
Research Grants: Advancing the Science of Myhre Syndrome
Funding cutting-edge research is at the heart of what we do. We provide research grants to scientists and institutions with promising ideas for advancing the understanding and treatment of Myhre Syndrome. These grants support various projects, from basic science investigations to clinical trials, all aimed at uncovering new knowledge and developing innovative therapies. By supporting research, we are investing in the future—one where Myhre Syndrome is better understood, more effectively treated, and, one day, we hope, cured. Find out more about our progress here.
Your generosity enables us to make meaningful progress in these areas, bringing hope to those affected by Myhre syndrome. Thank you for partnering with us in this important work.
Myhre Syndrome Events: Connecting and Empowering the Community
Bringing together the Myhre syndrome community through virtual and in-person events is essential for fostering connections and sharing knowledge. These events require investment, from the technology needed to support virtual participation to the logistics of creating a meaningful in-person experience. Your donations help us cover these costs, ensuring that families, researchers, and healthcare providers can gather to share experiences, learn about the latest research, and build a supportive network. We also apply for grants and secure sponsorships to supplement these events, but your contributions are so important in making these events possible.
Materials: Essential Resources for Our Community
Another key area where your donations are put to work is creating and distributing educational and support materials. For example, translating and designing resources such as the Myhre Syndrome Patient and Family Handbook ensures that vital information is accessible to everyone in our global community, regardless of language barriers. These materials provide invaluable guidance for patients, families, and healthcare providers, helping them navigate the challenges of Myhre syndrome with the latest, most accurate information available.
Supporting Clinics: Enhancing Patient Care and Research
We provide small grants to clinics dedicated to Myhre syndrome, helping them maintain and expand their essential services. These funds support the clinic staff who analyze patient data, develop new research initiatives, and present their findings at medical conferences. Investing in these clinics ensures that patients receive the highest standard of care and that new insights into the syndrome are continually generated and shared with the broader medical community.
Does your company match fund?
The search box below will show whether your company will match your donation as well as provide all the forms, guidelines and instructions you need. Your support funds research, education, advocacy to help people living with Myhre Syndrome live their best lives. See if your employer will match your donation!
Planned Giving - Leaving a Lasting Legacy
Did you know you can make a meaningful impact by leaving a portion of your estate to charity? There are several ways to ensure your legacy continues even after you're gone.
Charitable Bequests
Charitable bequests are a powerful way to leave a legacy that reflects your values. By designating a charity as a beneficiary in your will, you ensure that your commitment to making a difference endures. This simple act of giving can have a lasting impact, supporting causes you care about for years to come.
However, a bequest is just one way to give. Consulting with a planned-giving professional can be incredibly beneficial for those looking to maximize their charitable impact. These experts can help you explore options that might allow you to do even more during your lifetime and beyond.
Charitable Trusts
For those with high-value assets, Charitable Trusts offer a flexible and impactful way to give back. These trusts allow you to provide for charitable causes and other beneficiaries, creating a stream of income or a pool of assets dedicated to philanthropy. By setting up a Charitable Trust, you can ensure that your resources are used to support areas of need while benefiting loved ones or other important causes.
We’d love for you to consider making a planned gift to the Myhre Syndrome Foundation.
Myhre Syndrome Foundation is an IRS accredited 501(c)(3) non-profit charitable organization. All donations are tax-deductible. EIN 83-4086943. We are committed to ensuring donors have the highest level of confidence when making contributions to the foundation. Myhre Syndrome Foundation maintains minimum operating expenses. The Board of Directors and Professional Advisory Board are committed volunteers. No board member receives compensation.
Please email info@myhresyndrome.org to request financials.