The CMTRF is an organization for people with CMT by people with CMT.
Become someone that
helps build the future of CMT research and treatments.
We need more than hope,
we need ACTION!
A message from the Ambassador Lead:
Thank you for choosing to be a part of the ambassador team and, therefore, a part of the solution as we strive towards increasing research and awareness on CMT so that we can one day end this disease!
I am very excited to work with you and the other ambassadors as we find your strengths as a volunteer representative of the CMT Research Foundation.
I look forward to chatting with you and getting you started on this meaningful, empowering journey!
CMTRF Ambassador Lead
Who are the CMT Research Foundation Ambassadors?
We are a dedicated team of volunteers committed to supporting the work that the CMTRF is doing towards finding treatments and cures for CMT. We raise money, we cheerlead, and we spread awareness. We help connect the CMTRF with our local communities to continue to grow our impact. We will help end CMT.
As an Ambassador, not only will you have the opportunity to directly impact the future of CMT research and treatment, but you will get extra access to information about current CMT research projects. You will have the chance to share your story with the CMT community, as well as with other CMTRF members and researchers. And the highest fundraising Ambassadors may also be invited to network at a CMTRF event with one night’s stay in hotel, covered by the foundation.
I’ve loved getting to know other people online, who have similar symptoms and life experiences to me living with CMT. Talking to Chelsea has been great, she really makes you feel involved and like a part of the team.
What's Expected of Me as a CMT Research Foundation Ambassador?
We want the Ambassador team to be as successful as possible in order to uphold their recognition of being an advanced group of volunteers and fundraisers. To ensure this, there are goals that are set for those that participate in this program.
As a CMTRF Ambassador, you will be encouraged to attend quarterly virtual meetings to stay connected and up-to-date with all that is going on at the foundation. In these meetings, Ambassadors will also discuss supporting upcoming CMTRF events, as well as reporting on fundraising efforts.
We are proud and excited about the innovative research being funded by the CMTRF and we want you to be, too! Our Ambassadors help spread awareness about CMT research by:
- Subscribing and staying current on our CMTRF email updates. You can sign up here.
- Forwarding CMTRF email updates to friends and family and encouraging them to subscribe as well.
- Sharing CMTRF social media posts to both your personal profile and in community groups. We are present on Facebook, LinkedIn, Twitter, Instagram, and TikTok.
- Utilizing opportunities for a platform in their communities to talk about CMT research (Chelsea will support your needs as you find these opportunities).
We ask all Ambassadors to set a personal goal of raising at least $500/£370/€410 for research a year. We can help support you and your fundraising efforts and come up with fundraising ideas to suit your community and personal interests. For a list of fundraising ideas to get you started, read our blog here.
There are multiple platforms that can be used to raise these vital funds. Visit here to see the information we have on setting up online personal fundraisers. The convenience of an online fundraising platform eliminates the time and energy of dealing with cash – the fundraising tools do all the collecting and forwarding of donations for you. Please reach out to Chelsea if you need help choosing which platform works best for you and your personal fundraising goals.
I have grown so much as a person with the CMTRF Ambassador program. It has helped me open up and talk more about CMT to spread awareness and our community is always here to help you. We have close proximity to the board and can help move mountains to do everything we can to find a cure.
How Do I Become an Ambassador?
If you have read through the details to be involved in the CMTRF Ambassador program and are interested in joining the group, please fill out the registration form (button below) with your best contact information. Chelsea will reach out to you to discuss the next steps and to get you started!
Frequently Asked Questions
How do I track the progress of the research I am fundraising for?
What happens to the donations that I raise?
Researchers from across the globe submit applications for research funding. Each proposal is carefully vetted by the CMT Research Foundation’s Scientific Advisory Board , and only the best are funded. The Board evaluates each proposal based on scientific merit and its likelihood to make an impact in moving us closer to treatments and cures.
Because we feel a sense of urgency to deliver important scientific breakthroughs, proposals are quickly vetted while assuring comprehensive peer-review. Check here all the details on the research we’re currently funding.
But I’m not based in the United States. Can I be a CMT Research Foundation Ambassador?
Will treatments discovered in the United States benefit me or my family?
Our Scientific Advisory Board (SAB) has members from around the globe. And our research partners spread across many countries, not just the US.
Treatments, once developed and approved, will be available to everyone with CMT around the world!
You’re about to do something amazing.
Know More About CMT Research Foundation
Susan Ruediger and Patrick Livney started the CMT Research Foundation in 2018 with one single focus — fund research that leads to the development of treatments and cures for CMT.