Tag Archives: michele dupree

A Birthday Wish

Happy birthday to Michele Dupree! Michele doesn’t have ALS, but she is a tireless advocate for those of us who do, and she works harder to end this disease than anyone I’ve ever met. Michele is on the #whatwouldyougive team and she is giving up her voice and hands today – – on her birthday. Please consider donating to Michele’s page as a birthday gift for someone who has been so selfless and dedicated. We love you, Michele! Happy birthday!

Donate here.

Here are Michele’s own words about her challenge:

 I’d give anything to end ALS

A few weeks ago, I had the opportunity to sit with Steve Perrin, the CEO and Chief Scientific Officer of the ALS Therapy Development Institute (ALS.NET). Anyone who knows me knows that having a cocktail while chatting with Dr. Perrin was my idea of the perfect night! While anyone can call or email him with a question, having a candid conversation (and asking 1,000 questions) over a couple of glasses of wine proved to be a milestone in my life. I have never before felt so hopeful and excited about the state of ALS research but also so compelled to raise money for the work they are doing. I believe they are our greatest hope, they are doing things unconventionally and trying to work as fast as they can. Now is the time for all of us to do everything we can to help them work faster! They have their most promising treatment candidate to date currently being manufactured and the first ALS Precision Medicine Program preparing to test drugs against participant’s cell lines. Now imagine what we could do to move this faster!!

Since the day I met my friend Pam who was diagnosed with ALS, I have tried to use every opportunity to raise funding and awareness of this brutal disease. My birthday is no different and instead of wishes, gifts or cocktails, I would be grateful for your financial support to help end ALS.  Even $1 will mean a lot to me because it means you understand that each person makes a difference when it comes to the time bomb known as ALS.

In exchange for your donations, I will be giving up my voice and hands and will use an eye tracking computer for the day to show my friends with ALS how much I care about them and with your support- to help expedite a treatment.  Every dollar goes towards the critical work being done at the ALS TDI.

Thank you for caring and if you can’t give money, consider joining the team and raising money through your own network by giving up a physical ability.  Join here.

Please visit my friend Sarah’s fundraising page to see more about why I am doing this. I am doing this for her!

**ALS weakens and paralyzes voluntary muscles, like those in the arms, hands, feet, legs, throat, and lungs. The average patient lives only 2-5 years from diagnosis, but with more attention and funding, we CAN find treatments and an eventual cure for this disease.

I’m doing my part to make ALS history. What would you give to end this disease? Please help me by donating to ALS TDI and advancing ALS research. #whatwouldyougive #letsmakeALShistory

Thank you again! LET’S DO THIS!

|Categories: Cure, Drugs, Life, Research | Tags: , , | Permalink

TransFatty Lives

“As my therapist would say, it’s enlightenment by shotgun.”
—Patrick Sean O’Brien

Holy crap. I just finished watching TransFatty Lives, a documentary by Patrick Sean O’Brien. He’s been living with ALS for 10 years. I’m still digesting the movie, but also excited to write about it. The angles, the music, the appearances by Michele Dupree!

I caught my first glimpse of Patrick from across the crowded ballroom at last year’s ALS TDI White Coat Affair. He is a very large dude who was sporting a dyed Mohawk, and I found myself intimidated by his presence. Not scared of him, more just in awe of someone who was owning his situation so completely. The man is just so much cooler than me, a fact that was confirmed this morning as I watched his film.

Patrick was 30 years old when he was diagnosed with ALS in 2005. He was making a life for himself in New York City as a filmmaker, a writer, a DJ named TransFatty. His skill with a camera is obvious, and he sets up shots and scenes so masterfully that it’s no wonder the film won the Tribeca Film Festival Audience Award. It’s real, and difficult, but it’s also funny. There is laughter. There are hot pink walls. There is a very deep obsession with Howard Johnson’s.

At one point, Patrick says, “I never thought life could get more complicated than enjoying Menudo.”

But it did. Read More>

|Categories: Faces, Life | Tags: , , | Permalink

Speed4Flora

Rob and I were making our exit from the ALS TDI White Coat Affair gala in November, when we were flagged down by three women sitting together at a round table. Two of them were ALS advocates, and they were leaning in towards a third, a really lovely woman named Flora Fasolya, who was there from New York. One of the women, Michele Dupree, explained to me that Flora had been diagnosed about a year earlier, and that she needed to talk to someone who understood some of the physical difficulties she had been having.

We talked for a little while, Flora asking questions about how Rob and I manage certain parts of our day in an attempt to learn how she and her boyfriend, Chris, can adjust to their new life with ALS. I know Flora spoke with many of the other people at the party that night, too. She was gathering information, something that everyone with ALS should do. Even if no one knows exactly what to expect from this disease, and when, we can absolutely learn from each other’s experiences. Read More>

|Categories: Diagnosis, Life, Progression, Relationships | Tags: , , , , | Permalink