Make a gift in honor of Danielle today!
Hello family and friends,
If you have had the pleasure of meeting our daughter, you know that Danielle is a happy and loveable girl with a smile that lights up the room. When Danielle was 18 months old, she was diagnosed with an extremely rare degenerative disease called Mucolipidosis Type IV (ML4). Most people suffering from ML4 cannot walk or talk, have progressive neurological and motor delays, experience retinal degeneration causing blindness in their teenage years and have shortened lifespans.
Sadly, Danielle is now experiencing the more devastating effects of ML4. Danielle is losing motor skills due to increased muscle tightness, and activities such as standing or feeding herself are becoming very difficult for her. She has more difficulty eating and drinking and recently had surgery to get a feeding tube to assist with nutrition. The most recent devastating and heartbreaking change is that she started losing her eyesight.
The pain of watching our daughter slowly slip away due to this disease is indescribable. The fact that Danielle remains happy and faces every day with a smile while dealing with the unthinkable helps to keep us going. Nothing makes her happier than being around people, going to school, shopping, and listening to Lady Gaga. She is truly an inspiration and our beautiful little hero.
The ML4 Foundation is funding various researchers who are pursuing many types of drugs and gene therapy to help those suffering from ML4. Please join with us and other ML4 families by donating to our “Power Research Forward” 2023 fundraising campaign. The money raised will go directly to fund ML4 research.
With much love and gratitude,
Alissa and Chris Marino
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 Danielle Marino.
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