You have been nominated! Don’t worry, I’m not asking you to simultaneously freeze your ass off and waste water- in fact I’m asking you to use something you already have so it doesn’t go to waste.
We’re all familiar with the ALS ice bucket challenge by now- it’s popularity has raised over $100 million dollars donated from more than 3 million people to help raise awareness and funding to help fight Lou Gehrig’s disease. While I have feelings I’ll put aside about people (especially Californians) using extra water during a horrible drought, the donations and support for the ALS community has had an extreme upswing in the past few weeks, and I’d be hypocritical to dismiss the power of social media to provide needed awareness and funding for such a devastating diagnosis. I’m inspired by it’s effectiveness and impressed by how much has been raised.
As a bereaved parent, I can’t help but compare the awareness and donations for the SUDC Program, which not many people are familiar with- it’s raised just over 1 million dollars since it’s start over ten years ago. In contrast to the millions of federal dollars annually allotted to research and prevention of many diseases, even rare ones, the SUDC Program receives no federal funding and is dependent solely on private donations. While neither ALS or SUDC make the list of the leading causes of death in any age group, they and plenty of other rare, yet debilitating causes are more than worthy of attention from our minds and wallets, alike. The death rates between the two are nearly the same: ALS takes the lives of 2 out of every 100,000 adults, (usually diagnosed between the ages of 40-60) and SUDC is responsible for taking the lives of 1.5 per 100,000 children (usually ages 1-4) annually- the number gap in the statistics there is nearly non-existent; it’s merely in the awareness and funding where the number drastically differ- and I mean to change that.
I want to know why my son died. Moreover, I deserve to know, and every parent on the planet deserves all the prevention possible for protecting their children and their hearts from the permanent ache and the permanent question that reside in in mine, and from learning about SUDC the hard way. I don’t mean that want some vapid, existential hippie quote or religious passage to answer my question; I want an answer that science can prove, I want facts that can stand to test and reason, that I can look at and hold in my hands and head and comprehend, even if my heart never will. Most diagnosed with even the most unheard of diseases are granted at least that much.
I get through my days because my heart has been forced to accept that things happen and the world keeps turning and sometimes, that’s all the answer we get- but this isn’t that time. Here, I have power to help find a reason on some level for his death and my suffering, and to prevent others from ever having to live and feel this way.
And that takes funding.
It takes awareness.
It takes action.
It takes you.
There’s talk of “using your voice” all over advocacy sites, which I’ve chosen to take quite literally. I’ve never been able to sing in front of an audience- even karaoke to a room full of drunk people who could care less and wouldn’t remember, anyhow- but I have always been able to sing to, for and with my kids. Music has always played a large role in my life, and I’ve spent many rough patches, late nights and too-early mornings quelling the discomfort, exhaustion or anxiety of fussy babies with song. I’ve never been the best singer out of any group, but I was in choir all through my school years and I can at least carry a tune, if not perfectly. My voice is nothing big, but my love, my desire for change, for answers, for all of the other parents suffering from losing a child to SUDC to have the support and resources they need- that’s huge- bigger than my fear, ego, anxiety and grief combined. Music is a coping method I still use as balm for my own troubles all the time, and now I mean to use it to sing for Patrick and help him in the only way I still can.
The #singforsudc challenge is the same as the ALS ice bucket challenge in a few familiar ways: You donate $10, nominate three friends and have 24 hours to post your video- but not to buy ice and dump it on yourself- simply to record yourself singing a song that you sing to your children, or one you were sung as a child- any song about, for or to children will do. There is no minimum (or maximum) time limit- sing Twinkle, Twinkle in your car and get it over with in 20 seconds, sing something soulful and sentimental in your bathroom for the acoustics, even sing it loud and silly with your kids at the park- but do it. Use your voice. Donate, and nominate your friends, especially fellow parents, to do the same.
I chose to use one of the songs I used to sing for Patrick that, to me, exudes big love in sweet and simple way- especially the bond formed between parent and child. I (hopefully understandably) couldn’t get through speaking in the video and maintain my singing composure (heck, it took me a few takes to even find my composure, even without trying to speak first) but, despite my list of fears, I did it- and you can, too.
Easy-click donation link here: http://www.sudc.org/GetInvolved/Donate.aspx
Official Sing for SUDC page here: http://www.sudc.org/Get-Involved/Sing-for-SUDC-Challenge
If you’ve got another pressing cause cause close to your heart and/or you can’t carry a tune in a bucket, use your voice metaphorically and get creative with your video, and feel free to mention another cause along with SUDC. (I’m wearing turquoise in support of ImprovingBirth.org in my video) Tap dance for Fibromyalgia, stand on your head for heart disease, do skate tricks for pediatric cancer, paint a picture for Osteosarcoma… the world needs your voice, it needs your individual talent and passion to make a difference.
When I asked, “Which causes or diseases do you wish there was more activism and funding for?” on my Facebook page, I got a wide variety of responses- with a constantly updating list, I can’t link in them all, but here are a few other causes on the hearts of fellow parents, all of whom I challenge to #singforsudc and use their voices for their own causes, too- including, but not limited to:
Intrahepatic Cholestasis of Pregnancy (ICP) or Obstetric Choletasis
Anxiety and Depression/Suicide Prevention
Sensory Processing Disorder
Apraxia of Speech
… and in honor and memory of my father, who survived and thrived with both Cerebral Palsy and Diabetes, but was taken by Melanoma four years ago this very day, I add those diseases to the list, as well.
Please remember to make your post public if you’re using Facebook, and to use the tags #singforsudc and #useyourvoicechallenge and the link (http://www.sudc.org/GetInvolved/Donate.aspx) in your posts so that others know what to do and where to donate. If you choose to use your voice for an additional cause, please mention SUDC in your video, and when you nominate people to use their talents for what they love, ask them to mention your cause, too- that way, everyone can benefit from additional advocacy.
Off you go, then!
I can’t wait to hear you.
If you’re having any hesitation, take it from AFP.
Keep track of Sing for SUDC posts on:
And see it up on the SUDC Program homepage under “Get Involved” tab here: