Hello Everyone! Paul’s journey continues in 2023!! It has been a stressful year, once again, as Paul
bravely weathered 2 hospitalizations and surgeries. He is an amazing young man, who, despite his
disabilities, maintained an inner strength and demeanor that won the hearts of all who cared for him
during his illness. And now, it’s back to movies, restaurants, museums, street fairs, and music, music,
music!! Ya can’t keep a good man down!!

This year, my Pedal4Paul bike ride will take place in Queens, N. Y. with funds going directly to the ML4
Foundation, rather than the U. Penn Center for Orphan Diseases. Your continued generosity will help
fund a new researcher at the MGH (Mass Genral Hospital) laboratories, dedicated solely to the
advancement of ML4 gene therapy and a clinical natural history needed for a clinical trial of the new
gene therapy.

The ML4 Foundation and MGH are closer than ever to finalizing the steps necessary for a clinical trial to
begin. Without your support, we would never have gotten this far. Allan and I are so thankful for all that
you have provided thus far; we look forward to the day that we can say “We did it!!”

All our thanks,
Paula, Allan , and Paul Harris Kutner


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 Paul Kutner.

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