Reflections on Fatherhood

I knew pretty early on that I wasn’t destined to be the World’s Greatest Dad. But there are moments in my parenting career that will stick with me forever I think. Not because I particularly shine, but because they strike me as moments when my role as a father and my thinking about parenthood changed.

On Mother’s Day

Is this not our greatest wish for all of our children, and even for ourselves: To have a sense of self so true and bold that we can cry out, “I love myself, World!”

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.