Participant Info

Fundraising – The importance of fundraising

* Funds are what stand in the way between us and a treatment for CMT1A. Not scientific understanding. Not resources. Not clinics. Not patients. Money.

* The government is not going to fund this work. It is up to us. We are patients who are going to find a treatment for our own disease. We are families who want to stop the struggle of our loved ones. We are donors who are going to create a lasting legacy.

* Without fundraising, there is no treatment for Yohan and the other 2.8 million people with CMT. There is no treatment without you.

  • Fundraising Tips: Here are some helpful tips when fundraising for this event (a simple way to raise $1,000)
  • Educate your potential donors. You can obtain information on CMT by visiting the event how page and or going to www.
  • Set-up your fundraising page when registering with firstgiving. Tell your story and provide pictures
  • Start by donating $50 yourself.
  • Ask two family members to sponsor you for $50 each
  • Ask six friends to contribute $25.
  • Ask five co-workers to contribute $15
  • Ask five neighbors to contribute $15.
  • Ask your boss for a company contribution of $100.
  • Ask five local merchants to sponsor you for $50.
  • Ask four businesses you frequent for $50

What your fundraising dollars have meant to research aimed at creating treatments and identifying a cure for CMT:

  • STAR (Strategy to Accelerate Research) was launched in 2008. Since then, CMT research experts, clinicians and drug inventors have been working together to find a treatment for CMT.
  • The screening of more than 2.5 million compounds or potential drugs to treat CMT1A (Yohan’s type of CMT) has been completed.
  • These screening and collaborative partnerships with major pharmaceutical companies have helped us identify several potential drug candidates, bringing us closer to a treatment.
  • The STAR teams have been expanding to tackle other forms of CMT, too. We now have active programs covering about 90% of diagnosed CMT patients.
  • Over $3.5M was allocated to research in the past two years.
    • Thanks to all the capabilities we have developed over the years, we are being approached by many pharmaceutical companies who want to use our test models, clinical infrastructure, and scientific expertise to test their drugs for CMT.
    • In the last year alone, over 10 companies have approached us to partner in CMT drug development, clinical evaluation and community outreach. This is the most exciting sign ever that our STAR program is working and gaining tremendous momentum.

With your fundraising dollars, we hope to accomplish the following over the next few years:

  • Clinical planning has started.  Working together with the NIH and the MDA, we are developing our clinical infrastructure: new centers, more clinicians, patient information and history over time.
  • We are developing “biomarkers”, i.e., ways to quickly and accurately measure clinical outcomes of treatments in patients.
  • We are starting to use cellular and human stem cell models to identify and evaluate new therapies faster.
  • We are partnering with pharmaceutical companies and labs to apply breakthrough genetic therapies (like gene therapy, RNAi, CRISPR) to CMT.
  • We will continue to expand our program to cover more forms of CMT

Accommodation Options:

Hilton Garden Inn Burlington Downtown

Basin Harbor Club

Courtyard Burlington Harbor

Hotel Vermont

Bike Rentals.

If you need to rent a bike for the event please contact our local event supporter, Ski Rack

Cycling Tips – Safety and Guidelines:

  • DO NOT LITTER. Please put all wrappers, empty gel packs, etc back in your pocket and dispose of them at the next rest stop.
  • Obey all traffic signs and signals. This includes traffic lights and stop signs. If in doubt what the laws are … check.
  • Stay to the right, except to pass. Pass on the left side only. Do not pass on the right.
  • Ride in a single file.
  • Do not cross center line regardless of passing zone.
  • Use proper signals when turning. Make left turns from the center of the road or left turn lane.
  • Cross railroad tracks at right angles.
  • Ride in control of your bike at all times (i.e. being able to stop within a reasonable distance.)
  • Ride defensively, in consideration of your fellow riders. Do not ride too close to other riders.
  • Point out and call out any road hazards ahead. These include potholes, drain grates, stray animals, opening car doors, sticks or stones, parked cars, etc.
  • Do not overlap wheels. A slight direction change or gust of wind could easily cause you to touch wheels and fall.
  • When climbing hills, avoid following a wheel too closely. Many riders often lose their momentum when rising out of the saddle on a hill which can cause a sudden deceleration. This can often catch a rider who is following too closely, resulting in a fall from a wheel touch.
  • Communicate with your fellow riders, using proper cycling terms, such as “On your left,” “Car In back”, “Car in Front”, “Stopping”, “Slowing Down”, “On Your Left”, etc.
  • In the event of an Emergency: Call 911
  • Items to bring on your ride:
    • Spare Tire Tube
    • Money, License, Credit Card
    • Cell Phone
    • Water Bottles
    • Energy Bar(s)