Tag Archives: icebucketchallenge

#Whatwouldyougive FAQs

Yesterday, I launched a new fundraising campaign called #whatwouldyougive. I did this because I wanted to create a fundraiser that helped people understand just a bit of what it feels like to be stripped of the basic abilities that ALS takes away. The things that most of us take for granted. The things that I absolutely took for granted until I received an ALS diagnosis when I was 33 years old. I’m 36 now, and even after all I’ve given up, I’m not giving up.

While most fundraisers center around a physical activity that requires ability, this one is about the things ALS takes away. During the week of August 1-8, team members spend a day (or an hour) giving up an ability in an effort to *begin* to understand what life is like for a person with ALS.

Examples: Have someone feed you meals or brush your teeth; type on your phone to communicate. This experience is a fraction of what people with ALS deal with, all day, every day. What would you give in order to live normally again? What would you give to end this disease? Each team member reaches out to their network to raise money around their efforts.

Our team is raising money for ALS TDI, the largest nonprofit biotechnology organization dedicated to developing effective treatments for ALS. With more attention and funding, we can find treatments and an eventual cure for ALS.

Here are a few FAQs to help people better understand the concept and how to get involved. All support is so appreciated! Read More>

|Categories: Life, Research, Vanity | Tags: , , | Permalink

Precision Medicine

Rob and I stayed on west coast time during our visit to Boston, lazily ordering room service on our first couple of days because going outside and fending for ourselves would have required too much energy. This is why I was still in pajamas, and showing a rather inappropriate amount of leg when the server brought breakfast up at 1pm on Saturday. This isn’t like a sexy thing. I was in my wheelchair probably scrolling through my Facebook feed while Rob watched football. And you know what? It was perfect. The server may have found it even more perfect if I’d been wearing pants, but you can’t please everyone.

As I’ve already reported, we were in Boston for the ALS TDI party, but we were also there so that I could participate in TDI’s Precision Medicine program. On Monday morning, we got up “early” aka 9:30am, and headed down the street to Massachusetts General Hospital. The first part of the program involved having blood drawn, followed by a small skin biopsy, during which they removed a part of my arm that was about the size of a pencil eraser. The whole thing took 10 minutes.

Then we were off to ALS TDI’s offices in Cambridge. Read More>

|Categories: Cure, Doctors, Drugs, Progression, Research | Tags: , , , | Permalink

ALS By Any Other Name

It seems like practically overnight, thanks to the #icebucketchallenge, no one is referring to ALS as Lou Gehrig’s Disease anymore. There are still the articles that lead off with the seemingly requisite “better known as Lou Gehrig’s Disease,” but as someone who reads the vast majority of what is written about ALS, I’m noticing a change in the language. This is a real victory for ALS awareness, successfully escorting the disease into the 21st century. But there is still work to be done.

Lou Gehrig has been The Face of ALS for 75 years. And during that time, there has been minimal progress towards viable treatments and a cure. Part of this is because the disease is rare. Part of it is because it wasn’t resonating with people as a contemporary issue to address. Now, suddenly, it seems to be resonating.

The ALS Association and all other organizations who are using Gehrig’s name and image to encourage awareness and funding for this devastating disease must take notice of this shift in the landscape. Separating ALS from Lou Gehrig should be an easy transition now that it’s actually—finally—ALS that people are talking about.

Identifying a disease with a specific person who died of it before World War II does a disservice to those who are currently living with said disease. The further we get from Gehrig’s untimely death in 1941, the fewer people who are familiar with his story. I know that’s hard to understand if you are well aware of who he was, but walk around, ask some young people, maybe hit up some folks who aren’t big baseball fans, and see what you discover. Read More>

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