Charcot-Marie-Tooth Disease: An Overlooked Rare Condition

Written by Miron Hall

Because CMT is a rare disease, it often receives less attention and funding than more common medical conditions. Without adequate resources, researchers struggle to develop effective treatments and ultimately find a cure. This is where fundraising plays a crucial role. It helps provide the financial support necessary to drive research forward, allowing scientists to better understand these mutations, develop innovative treatments, and improve the quality of life for those of us living with CMT.

Additionally, fundraising for CMT is of utmost importance because it also helps raise awareness about the disease. Most people outside of patients, specialists, or researchers have never even heard of CMT. People hear “Charcot-Marie-Tooth” and tend to assume it has something to do with dental care or sharks! And this overall lack of awareness may inadvertently lead to delayed diagnoses for people who might have it and not even know. I’ve heard accounts of people with CMT previously being suspected of having MS or Guillain-Barre syndrome before they finally got the correct diagnosis. Or other individuals who experienced symptoms for years but never actively sought a diagnosis because they didn’t know what they were experiencing was abnormal – perhaps because they attributed their symptoms to the general process of aging or to other preexisting medical conditions they had. So, by raising funds and thereby raising awareness, we can help provide an opportunity for more people to be diagnosed promptly and receive the support that they need.

But fundraising for research isn’t just about research. Fundraising for CMT is also about creating a sense of community and support for those affected by it. When individuals and families facing the challenges of CMT see that other people care and are actually willing to invest in research, it can provide hope and a sense of validation. It’s a way of acknowledging that our problems are worth solving – which is true; they are! This reassurance is particularly meaningful for many patients who may have felt that their symptoms have been dismissed or downplayed in the past. Certainly, CMT is not always a visibly apparent condition. I’m sure many of us have heard, at one point in our lives, that we “looked fine” or “seemed normal.” But that doesn’t mean that we aren’t affected by CMT nor does it mean that we wouldn’t still benefit from a cure!

And while any means of fundraising – be it independent or otherwise – is beneficial for our overall goal of funding research, the CMT Research Foundation does a great job of providing this opportunity for people who may have limited or no prior fundraising experience, such as myself. I won’t say that fundraising is “easy,” especially if you’ve never done it before. However, the CMTRF makes it a lot easier by hosting fundraising pages directly on the QGIV platform. This easily allows people to sign up and create their own fundraising goal, complete with an opportunity to share their personal message about CMT. You can also share your fundraiser directly from the platform, be it through scheduled emails or link sharing. There is also a feature that allows you to easily keep track of how much you’ve raised and to visualize how much of your goal is left. So even if you’re not tech-savvy, this platform is very user-friendly and would be a great starting point for fundraising.

Understandably, there is this sort of perception of fundraising as consisting of major events with lots of moving pieces. And while these types of events are great because they can be very interactive and raise a lot of public awareness, it isn’t necessary for all of fundraising to take place on such a grand scale. Anything from a 5k to a book swap to a bake sale can raise money. Even simply talking to your friends, family, or coworkers about the CMTRF and our mission can inspire people to donate, and no amount of money is too small to count in the long run. If even just 20 new people made it a goal to raise at least $250, that would be an additional $5,000 towards research right there! That might not seem like a lot, but smaller amounts of money do add up over time! And that’s the other component of fundraising: Time. There is no time limit when it comes to funding research. We can, and ideally, will keep raising money until there is a cure for all of us, regardless of CMT subtype, whether it takes 5, 15, or 50 more years. But more fundraising might help expedite this process so that, hopefully, a cure doesn’t feel like a lifetime away. That’s one of the most inspiring things about collective action. When we come together to support a common cause, we can achieve incredible things!

So, make no mistake – fundraising with the CMT Research Foundation is not about counting the dollars and dimes. It’s about driving scientific progress, building a community, and most importantly, it’s about improving all our lives! It’s about giving hope to those who wake up every morning with CMT knowing that things will get worse before they get better and knowing that we are not alone in this journey.

By mobilizing the CMT community and our social networks, we can use fundraising to become an unstoppable force of positive change in the fight against Charcot-Marie-Tooth.


About the author: Miron Hall is a Disease Intervention Specialist from Panama City, Florida. He lives with CMT1A and has been a CMTRF Ambassador since 2022. View his personal fundraising page here.

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