Welcome to the ULF Ambassador Program
This program has been developed to foster even deeper connections in the leukodystrophy community. In its pilot phase, the ULF has established 5 regions in North America and Canada.
- What is the Ambassador Program?
The Ambassador Program provides an “on the ground” resource to educate and support families affected by leukodystrophy, and spread awareness in more focused geographic regions. The ULF is based out of Illinois, but with more and more families facing new diagnoses globally, the Ambassador Program allows the ULF to offer more personalized support of families reaching out for support and resources. While newly diagnosed families are strongly encouraged to utilize the Program, families at any stage of their leukodystrophy journey are able to benefit from the Ambassador Program.
- What can an Ambassador do for you?
Ambassadors are people who have lived experience with leukodystrophies and are spaced out geographically to be able to offer more relevant information to families as they reach out. When you reach out, your request will be answered by an Ambassador most appropriate to handle your need. For example, a family seeking genetic counseling resources in New York State would be referred to our New York State Ambassadors. However, a person reaching out seeking information on how to connect to a type-specific leukodystrophy group will be referred to an Ambassador familiar with that type of leukodystrophy regardless of their geographic location.
Our Ambassadors are guides to resources and answers to your questions. Examples of things you may reach out to our Ambassadors for (but not limited to!):
- locating a physician or leukodystrophy center
- providing basic leukodystrophy educational materials to share with medical professionals or care team members who are uninformed in leukodystrophies in general or specific types
- assistance getting in touch with local resource agencies
Please know that our Ambassadors are unable to offer medical or legal advice, but can direct you to appropriate resources that can. If you are in need of emergent mental health support or crisis support, here are some resources. (Hyperlink)
Find Your Region!
Region 1: USA North East
Maine
New Hampshire
Vermont
Massachusetts
New York
Pennsylvania
Rhode Island
Connecticut
New Jersey
Delaware
Maryland
District of Columbia
Region 2: USA Mid-South
Michigan
Indiana
Ohio
Kentucky
Tennessee
West Virginia
Virginia
North Carolina
South Carolina
Georgia
Florida
Alabama
Mississippi
Region 3: USA Mid-West
Minnesota
Wisconsin
Illinois
North Dakota
South Dakota
Nebraska
Kansas
Iowa
Missouri
Arkansas
Oklahoma
Texas
Louisiana
Region 4: USA West
Washington
Idaho
Montana
Oregon
Wyoming
California
Nevada
Utah
Arizona
New Mexico
Colorado
Hawaii
Alaska
Ambassador Program Events
Support Groups: Monthly Caregiver Support Groups are currently scheduled; you can view the upcoming dates here (hyperlink). In the future, we hope to also offer support groups for other parts of the community, such as Affected Men, Affected Women, Caregiving Spouses, Caregiving Parents, Siblings, Newly Diagnosed, and more. If you have a specific support group need, please reach out to Keely Mata at keely@ulf.org for consideration of future support group opportunities.
Educational Webinars: Special interest topics are featured in educational webinars! To expand the general interest sessions we offer at the annual Family Conference, these webinars are scheduled year round. You can view the current schedule of upcoming webinars here (hyperlink).
Meet Our Ambassadors:
Click their photo for more information!
Interested in Being an Ambassador?
We will begin actively recruiting Ambassadors in July! People interested in becoming an Ambassador will need to fill out an application and submit a resume that demonstrates their previous volunteer experience.