Today is the last day of ALS Awareness Month. That doesn’t really matter to me, although I’ve appreciated all of the posts and efforts people have made during the month of May to raise awareness and share their realities of life with ALS.
Tomorrow is June. Am I going to stop raising awareness of ALS and move on to something else? Of course not. This is my thing. After all, what if we only celebrated hotdogs on July 23, which is National Hotdog Day? Would that be fair to hotdogs? The answer is no, it would not. And since we’re asking questions, is hotdog one word? Dictation seems to think so, and I’m too lazy to argue.
May was a good month. I celebrated my seventh Mother’s Day. I survived while Rob and Scarlett went to Arizona. Some of my best friends came to spend a weekend with me. Memorial Day weekend was full of peach picking and pool parties. Otto turned one, and his personality changed not at all.
But we also lost friends and loved ones. People with ALS got weaker. So what’s happening in June is that the #whatwouldyougive campaign is coming back. I’m working out all the details right now, and in the next couple of weeks, I will share how you can join the team, donate to the cause, and help make ALS history. I’m hoping for a big team and a huge showing this year, because I know that it will really make a difference to people who have ALS now and people who will be diagnosed in the future.
We are committed to raising money for ALS TDI, and there are exciting things going on in their lab. TDI has partnered with other organizations, including The ALS Association and ALS One to push a promising drug through the screening and trial processes. It’s expensive to do this, and while it seems like the current presidential campaigns (for example) aren’t hurting for cash, in the world of ALS research there’s never enough money. So that’s why we keep pushing: In June, in July, and beyond.
TDI’s CEO and CSO Dr. Steve Perrin talks about the future of ALS treatments, and you can hear in his voice that they’re coming. At a previous job, he was instrumental in developing drugs for multiple sclerosis, and now there are more than 10 medications that treat that disease. They’ll follow a similar path with ALS, making headway with one drug, and de-risking the process so that pharmaceutical companies are more incentivized to get involved. It’s going to happen. It’s just a matter of how hard and fast we can work and how many lives can be saved.
Scarlett’s last day of kindergarten is next Wednesday. She keeps saying “Then I’ll be a first grader!” It’s hard to believe, and my overarching feeling is one of deep gratitude that I was here for kindergarten, and involved in more ways than I might have thought possible. It’s good, but it’s not enough. I want to be there with her on her first actual day of first grade. I will be there. My body is slowing down, it’s getting tired. I look at my fingers and try to decide which hand is stronger, knowing that neither one of them is strong enough. But my resolve is strong. My commitment is strong. I am a stubborn Scorpio who’s not scared of a fight, and I’m not going down easily.
It’s also possible that I overdid the caffeine this morning. But it was either this or a post about the dream I had the other night that I was in Adventures in Babysitting. #nobodygetsoutofthisplacewithoutsingingtheblues
Thanks, dear readers, for a great ALS Awareness Month. I’m ready to keep the momentum going, and put an end to this disease.
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If you have not seen Margaret Rosano’s facebook and seen Maya Angelou’ s comment about ‘”being a rainbow in somebodies dark cloud” , do so now. I can’t imagine how often you have been a “rainbow in somebodies dark cloud (mine especially) but I would venture to guess it runs in the thousands. I love you. N
Amazing, as always, my dear friend. Glad May was mostly a month of joy. Miss you much and love you all.
Nina
I have been reading your blog for over a year now and twice a week i await your next post. I am amazed that the things you write about so closley relate to my feelings and the daily obsticals i face as a person with ALS. I was diagnosed 2.5 years ago when i was 33. I find your #whatwouldyougive campaign very interesting, to me it seems odd to run or walk to raise money for ALS when we or most of us cant walk. Are you open to donations for the campaign being made to other ALS associations? Im not sure how it works for canadians to donate to an american association. But i would like to promote your campaign.
Thanks for writing your blog i enjoy reading it