| Name of Non-Profit Organization * |
Maple Syrup Urine Disease (MSUD) Family Support Group
|
|---|---|
| Today’s Date: * | Thursday, September 4, 2025 |
| Organization’s website | http://www.msud-support.org |
| EIN / 501(C)(3)Number * |
54-1556981
|
| What year did your organization receive it’s non-profit status? * |
1984
|
| Address * | 
958 Medinah TerraceColumbus, Ohio 43235 United States |
| County * |
Ohio
|
| Point of Contact for Magnified Giving Youth * | Denise Kolivoski |
| Point of Contact’s Title * |
Executive Director
|
| Point of Contact’s Email Address * | execdirector@msud-support.org |
| Point of Contact’s Phone Number | (814) 218-9498 |
| Executive Director’s Name * |
Denise L. Kolivoski, MBA
|
| What is the mission of your organization? | |
| The MSUD Family Support Group is dedicated to supporting children, individuals, and families affected by Maple Syrup Urine Disease (MSUD). We provide education, advocacy, and community connections to improve quality of life, advance research, and promote access to medical nutrition and treatment. By fostering collaboration among families, healthcare professionals, and researchers, we strive to build hope, increase awareness, and work toward better outcomes for all those living with MSUD.
Maple Syrup Urine Disease (MSUD) is a rare genetic metabolic disorder in which the body cannot properly break down certain amino acids (the building blocks of protein) — specifically leucine, isoleucine, and valine. To stay healthy, people with MSUD must follow a carefully controlled low-protein diet and drink special medical formula every day to provide essential nutrients without harmful amino acids. The MSUD Family Support Group provides resources, education, and community support for children, individuals, and families living with this condition. Although this is a rare disease, there is a concentration in Ohio, Pennsylvania and New York states. Our Board President and Treasurer, the Bulcher family, live in Columbus, Ohio, which is the international headquarters for the MSUD Family Support Group. |
|
| Which social causes (up to 3 choices) does your agency address through its programming? * |
|
| Any comments about your selections you would like to share with the student philanthropists? |
Youth with MSUD would love to collaborate with you and find hope with your support of their special condition!
|
| Does your organization have volunteer opportunities available for students? * |
Yes, Grades 9 – 12
|
| List possible volunteer opportunities -or- a link to where they can be found on the web. | |
| 1. Peer-to-Peer Ambassadors
Connect with other teens and young adults living with MSUD. Share experiences about managing diet, formula, and daily life through meetups, social media, or short videos. Help create a welcoming space for newly diagnosed youth. 2. Awareness Campaign Creators Design graphics, TikToks, Instagram reels, or short posts to spread awareness of MSUD. Contribute to campaigns like Rare Disease Day, MSUD Awareness Week, or #MSUDMoves. 3. Event Helpers Assist at the 21st MSUD Symposium in Cleveland, Ohio, June 25–27, 2026, or at Family Camps. Support with setup, registration, kids’ activities, or tech help. Be a “buddy” for younger children who may be nervous about formula or special diets. 4. Fundraising Champions Organize school-based or community fundraising events (walks, bake sales, awareness days). Lead a peer-to-peer team for the MSUD Moves national campaign. Help raise awareness of the costs of formula and special low-protein foods. 5. Creative Contributors Submit artwork, poetry, or short stories for the MSUD newsletter or website. Help design flyers, posters, or digital media for upcoming events. 6. Advocacy in Action Participate in letter-writing or video campaigns to policymakers about access to medical formula and specialized low-protein foods. Share personal perspectives during advocacy days or webinars to highlight the importance of formula coverage and research. |
|
| Volunteer coordinator | Denise Kolivoski |
| Volunteer coordinator’s email address | execdirector@msud-support.org |
| Volunteer coordinator’s phone number | (814) 218-9498 |
| Student Connection Preference (click all that apply): * |
|
