Get Moving for GRI - Massachusetts

Join us for our 3rd Annual Get Moving for GRI Massachusetts in-person fundraiser to support CureGRIN Foundation. If you can't make this year's walk please consider a donation to help us reach our goal!

This year's walk will be held at the beautiful Doyle Community Park in Leominster, MA as it has been the past 2 years. Like previous years, please park at the Boys and Girls Club located at 365 Lindell Avenue, Leominster, MA 01453.

In-Person Fundraiser Walk Details

• When: Saturday, June 21st @ 10 AM 
• Where: Doyle Community Park - 464 Abbott Avenue, Leominster, MA (Instead of parking at the Boys and Girls Club this year, we will be parking in the main Trustee parking lot that we typically walk through)
• Length of Walk: 1.5 mile crush gravel stroller accessible walking path
• Registration Fee: Instead of a registration fee this year we are asking for a donation of your choice. Our family personally covers all costs associated with the walk so 100% of your donations and raffle purchases will go directly to CureGRIN Foundation. 
• What to Wear: Please wear GRI colors to the walk again this year Blue, Orange, or Purple

Last year's raffle was a great success so we will be doing that again this year. Raffle prizes include:

• $25 Bull Run Gift Card
• $25 110 Grill Gift Card
• $50 Gibbet Hill Gift Card
• $50 Forge & Vine Gift Card
• $25 Kimball Farm Gift Card
• $20 Cherry Hill Ice Cream Gift Cards (3 of these will be raffled)
• 4 WooSox Tickets (Game of your choice)
• 4 Davis Farmland Tickets (General Admission)
• 4 Acton Discovery Museum Tickets (General Admission)
• 3 x 2-Hour Launch Trampoline Park Jump Passes
• Red Apple Farm - Pick Your Own 1/2 Bushel of Apples, 4 Hayride Tickets and 2 Cups of Animal Feed
• 4 x Great Wolf Lodge Waterpark Day Passes ($400 value)

Raffle tickets will be available the day of the walk. We will be accepting cash and Venmo. 
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Why is fundraising so important for rare disease organizations?
1. It's a common misconception that once you receive a GRI Diagnosis, you will find a specialist and get treatment. This is unbelievably false. Doctors don't learn ANYTHING about rare diseases in medical school and even if they did, it would be incredibly brief as there are over 7,000 rare conditions. A rare disease is hard to diagnose and sometimes it can take 4-9 years to get that diagnosis. Out of that 7,000 only 500 conditions have an actual FDA approved treatment. A clinical trial, by the way, once we get to that point can take TEN YEARS from inception to treatment. None of this is overnight.

2. GRI Disorders are relatively newly discovered. Within the last 10 or so years. 10 years in rare disease research is in its infancy. While yes, we are finding new families each day, if we can't record them in our census or registries, they DO NOT exist for research purposes. Our patient population is tiny and developing a therapy is not financially feasible for a pharma company. The more families that can participate in the Census, the better chance we have at recruiting interested biotech.

3. Rare diseases are not research priorities for the government or funding institutions. They prioritize diseases that affect a larger number of people. That leaves us. The parents. Raising money for a multitude of things to make our children's lives better.

Cure GRIN Foundation is tackling this and more. Creating the Census to increase our community’s chances for clinical trials and drug development. Developing a symposium of GRI researchers to fast track a treatment for every single GRI gene. Advocating on behalf of our kids so the government knows we exist and we won't give up. Connecting families around the world so they know they aren't alone in this journey.

The biggest challenge we have in fundraising for a treatment or a cure is you won’t get immediate satisfaction mainly because of the reasons above. This is a fight that will take years and though you can't see behind the scenes, please know we are working furiously. Every single cent we receive is strategically managed to maximize their impact for our mission and our families.