On Mother’s Day

On this Mother’s Day and others passed, I’ve often thought about what it means to be a mother. What is that defining moment? Is it bringing your child into the world, triumphing over pain and nine long months of increasing discomfort and sacrifice? For so many Moms this day is stolen from them, in the wake of an unexpected diagnosis …

Talia’s Story on Channel 7

Boston’s Channel 7 News covered Talia’s fight against CMT4J in a story that aired on April 28 … watch it below and be sure to share this page!

WCVB-TV Boston: Family Fights to Find Cure for Daughter’s Rare Disease

Boston’s ABC affiliate WCVB covered Talia’s fight against CMT4J in a story that aired on March 1st and 2nd … watch it below and be sure to share this page with your friends and family! Share this Post

Research Update: “Better than Anticipated”

We are on target with our pre-clinical work at Jackson Labs in Maine. CureCMT4J funded the creation and production of the viral vector to be used in mice this April/May.

From Diagnosis to Hope

Jakeb’s CMT4J is starting to progress rapidly. His hands ache all the time. Sometimes he has a hard time breathing. Leg braces help, but he still struggles to climb stairs or walk longer distances without tiring.

The Magic Quarter

These are some of the ways my daughter Talia is funny. If you meet her sometime, maybe you’ll agree. But you have to kinda spend some time with her and she’s gotta have time to figure you out. But then she can be pretty funny. Trust me.

Scientific & Medical Update

After three months of fundraising, relearning science on a cellular level, and lots of logistical planning, the Talia Duff Foundation hosted the first meeting of world-experts in CMT4J in Bethesda, MD at the end of September.

Welcome to Ethan

While on vacation this summer a family from Washington reached out to us after seeing Dr. Jun Li at Vanderbilt University. We emailed back and forth several times before actually finding a time to talk—that three-hour time difference can make it tough to connect! But finally, on an unusually chilly night in August, I sat outside and listened to Ethan’s story.

September

September is a bitter-sweet celebration for most Moms I know. It is hard to say “goodbye” to those lazy, unscheduled days spent reading on the hammock, followed by a luxuriously slow, we’ll-get-there-when-we-get-there trip to the beach. The race to get out the door forgotten, the nightly slog of making lunches gone. And yet, the lack of routine and nagging leave my kids reverting back to bad habits and hair that’s gone un-brushed for days. But in our house September carries with it a push-pull of joy and sadness that feels even more magnified.

Great Pond

I realized that a large part of parenting was giving up on the plans you had for your kids and accepting that they were going to have their own path. But I didn’t give up on instilling in them a love for the outdoors. Hence, the kayak. Kayaking seemed like a decent compromise. It didn’t matter that she couldn’t walk — we could still have adventures outdoors. If her extra chromosome had cursed her with loose joints and low muscle tone, there was no reason she couldn’t wield a paddle in the front of a two-person kayak.