Category Archives: Cure

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

#WhatWouldYouGive 2016

Imagine two newborn babies wrestling while having temper tantrums, and that’s the sound this bird in the tree above me is making right now. Seriously, I’ve never heard anything like it, and I so wish I could somehow attach an audio file to this blog.

It’s a gorgeous day in San Francisco, and I’ve spent it in a state of semi-consciousness on the back deck. It makes me think of summer days in Chicago, when my friends and I would rollerblade to the beach and slather ourselves in Tropical Sun dark tanning oil, so we could marinate for six hours while being entirely unprotected from UV rays. This being San Francisco, I’m wearing a sweater and socks, but it’s comfortable, even with the weird avian nursery scandal going on overhead.

Scarlett is in circus camp this week, and yesterday she practiced juggling and walking on stilts. Obviously, I’ll be living vicariously through her all summer, since the main thing I have to report about my day is the noise of a crow with multiple personalities.

Except of course that’s not true. Read More>

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Hands On

I have bright purple nails. They will last for at least three weeks, and probably longer. It’s just regular nail polish, not the gel or no-chip kind that is supposed to withstand the tsunami of running a household. I don’t need that kind anymore. When I used to wear regular nail polish, it would chip within two days, helped along by my fluttering fingers that were always in motion. But now, it lasts forever. I don’t cook, I don’t clean, I don’t bathe my child or wash my own hair. I don’t even have the energy to pick at the polish the way I used to, and so my hands always look nice now, my skin soft, the nails short and square. Thanks, ALS.

Sometimes it’s nice to have other people do things for you. I’ve always liked getting my nails done, as opposed to doing them myself. And I’ve never cut my own hair… Wait, I take that back, I did once cut my own hair in my early 20s by putting it in a ponytail and lopping off the tail part. That was pretty satisfying in an I’m going to regret this later kind of way.

But there’s lots of self care that’s just better to do yourself. Flossing, for example. I know I should consider myself lucky that I have an assistant who is willing to floss my teeth, and I do. But still. Read More>

|Categories: Age, Cure, Drugs, Faces, Life, Progression, Research, Vanity, Venting | Tags: , , , , , | Permalink