Make a gift in honor of Rachel today!
Most of you know Rachel – our super happy, humor-loving, always hungry (for both food and life) 16 year old. Rachel was the first grandchild born on both sides of our family – with her very first breath she created our “next generation.” She was beautiful, smiley, seemingly healthy and jokingly, we thought “a little lazy”, as she developed slowly, missing many of her milestones.
Eventually, right around the time she turned one, Rachel was diagnosed with a rare neurological disease called ML4. All aspects of Rachel’s development are affected by this disease – she can’t walk or talk, and her vision is quickly deteriorating.
While Rachel struggles to do so many simple things that most people take for granted, she very easily accomplishes those that remind us what life is all about – she smiles big, laughs loudly, and celebrates wildly – always ready for a good ball game or lively party. Rachel doesn’t know hatred, greed or jealousy. Instead, she demonstrates unconditional love, finding her way into the hearts of so many people.
There is currently no cure for MLIV, but there has been so much amazing research and recent progress that provides us great hope for Rachel’s future, including a gene therapy being developed right now. Many of you have been a very integral part of our journey, and we are thankful for that. Reaching this next milestone depends on us, and we would greatly appreciate any donation, big or small, that you can make to the ML4 research and join us in rooting for Rachel.
ABOUT THE ML4 FOUNDATION
ML4 is a genetic disease caused by the mutation of a single gene that results in the loss of a protein (MCLN1). This incredibly important protein is required by the body for normal functioning: without MCLN1, children and adults with ML4 suffer from progressive and debilitating loss of gross and small motor function, go blind, develop problems chewing and swallowing, rarely have the ability to speak, cannot walk, and over time, lose many abilities that they work hard to acquire when they are young.
The funds raised by the ML4 Foundation are directed to a research program at Massachusetts General Hospital in Boston. We have been working for several years with a team there to create a gene therapy to treat ML4. We are also funding a large-scale natural history study of ML4, bringing ML4 patients from around the world to the MGH clinic to be seen by specialists in this disease. YOUR DONATIONS made this work possible and allow it to continue at a speedy pace!
If you prefer to donate by check, you may mail it to the following address, and note that it is given in honor of Rachel Cohn.
Mucolipidosis IV Foundation
1440 Spring Street NW
Atlanta, Georgia 30309
The ML4 Foundation is a U.S. 501 (c)(3) nonprofit charitable organization.
Tax ID 13-3633501