Monday, August 18, 2014

Why ALS deserves its day= stop comparing it to Type 1 funding ideas

EVERY 90 min someone dies of ALS, (Lou Gehrig's Disease).

Dave and 3/4 of their kids back when I knew them
This disease came into my life by name after my son was diagnosed with Type 1 diabetes. It was taking the life of my longtime D.C. friend's dad. The Gillam family were my second family for a time in my life. We shared a cabin, and played endlessly together since we lived 2 houses away from one another. I had dinners and sleepovers alongside the kids. Their dad, Dave, was another father to me; which meant he tolerated my presence, fed me when hungry, and had embarrassing stories to black mail me with later in life.

Dave's wife and my mom are best friends from over 36 years now. Lib came to visit my folks these past years in CA, and I'd hear about the mystery taking Dave's life that went undiagnosed until just over a year before he passed.

Lib and my childhood neighbor and friend, Sara
His oldest and only daughter was married this past summer, to which I happily attended. There was not a dry eye in the house anytime Dave was mentioned. It was a beautiful day and tribute to a loving man and incredible father.

This bucket challenge has affected our nation, gone viral in social media, and has some putting the letters "A, L, & S" together for the first time.

What was my first instinct alongside many of you? The obvious: "What about _____" (fill in the cause you care about, the illness you seek cured).
Another instinctual thought, "Can we do this for diabetes?"

The Logic: Type 1 diabetes took my best friends life from her, it almost took my son's life...
Then I recalled a very SIMPLE concept explained yesterday to my young son.
A neighbor of elementary school age shared that he got a cup with his name on it and was very excited about it. Instead of sharing in his joy, my son exclaimed, "I just got one, too!" (which happens to be true).
My husband simply explained, "Share in your friend's joy and excitement for his new things, don't 'one up' him about it. It seems like you missed the point of why they told you in the first place; which was to SHARE it with you."

The reality: We should rejoice with ALS having "its day".  This disease has had little to no exposure, and has not been researched like many other diseases. There is no taste in "me too-ing" the challenge gone viral. Bad form in copy-cat-ing. (In my humble opinion).

Dave and his oldest son, Michael, (from picture above)
with Michael's girlfriend, Stephanie.
More reality: (please view video HERE of former NFL Saint/ALS sufferer Steve Gleason doing it nude. (Don't worry, it's G-rated, parents)!

The man who began the challenge, Corey Griffin, unfortunately died this past week. He was on a mission to raise awareness for his friend. "Griffin was a friend of Pete Frates, the former Boston College baseball player with ALS who is credited with inspiring the ice bucket challenge. So far it's raised more than $11 million."
(from article link HEREPlease consider this for a moment when wanting to fundraise for a cure:

  • Have you set the example and donated yourself?
  • Are your friends and family aware of your cause?
  • Have you EVER partnered with the organization of choice to find the cure?

If so, you are less than 10% of Type 1 people.  (We are only 8.3% of the US population).
Let that sink in.

Two ladies I "social media stalk" (because they are experienced & wise), and have shared their perspective which is very similar to my own. They are the power couple of the DOC (diabetic online community), good friends miles apart, and when you read on you will see:
Moira McCarthy, author of "Raising Teens with Diabetes", who recently funded $28k of the 1.2million raised in the Ride to Cure for JDRF says," Why not do what I did 17 years ago and

  • do research on what you are passionate about
  • find an org that supports it then...
  • join up with their events and raise donations and awareness."

Makes sense and a bit....unachievable, you say? I'd see her encouragement as "reaching for the stars," except I have had some success with fundraising recently. With no guide or trend to copy-cat, I did what I had done 22 yrs ago to raise money for a Guatemala mission trip. I sent snail mail. My dad helped me; he has been the fundraising coordinator for major non-profits. He gave me the "secret formula" again when we needed $15k for a service dog, and it worked. In 5 months we had all the money asked for. It was unbelievable, and I cried in gratitude every day we got a response card. Read more HERE on how to do this, too. I did not "crowd fund" or get a news team to feature our story, I merely asked those (not even immediately) within our family and friends circle. And it happened.

It took a few years to "come down" from all the work it took to find our way in the diabetic alert dog industry. By the time it settled, the family of my best friend (who died from T1 complications) and I decided last min to team up for a walk for the CURE (diabetes). We invited everyone we knew and literally had step by step ideas and guiding on HOW to raise money form the website once we registered. I did it every way but the way I had for our dog. Can't even say we got much more than $600 in the few weeks we "went at it" because we did not do it the same way. The yogurt shop that offered a dollar sneaker to put on their wall raised $50 from the community. The shop owner, donated $200 because we have known her for many years (and we didn't even ask)!

It's our relationship to people that makes things "happen"
Do your friends know your passion for awareness and to CURE?
If they don't; start there. Get moving on speaking up. SHARE IT. 
L-R Jonathan, Michael (me) and Mark. the brothers
I never had...
I know about ALS because of the Gillam family. I cried with, and hugged these boys just a few months ago; and now I am elated to share in their victory for ALS awareness and research. I haven't personally gotten the bucket challenge, but I don't need to. I just need a link to know where to donate. Do I need to be asked? Not at all, because there is so much hype on it.

Type 1 needs HYPE, and we are the only ones to generate it. November 14 is World Diabetes Day and we have a choice.
We can unintentionally sound like my 9yr old son, (from the cup story), or we can start the awareness where it deserves to be noticed; where it makes the most sense. 
What's the plan of action? Who knows. It's been suggested by Moira's better half, (insert friend humor), Michelle Weisenberg, " Maybe just post "hope" on our hands and ask others to do the same? But not call it a 'challenge'".
I personally agree and every year I have changed my profile picture to that hand picture and asked my kid's school to wear blue (since they do PINK so well in OCT). I have yet to find success in that request, but I'm gonna keep on doing it until it WORKS!

What say you? Join HERE  to further the discussion: Talk it out in this group of T1 parents and advocates...

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