Wednesday, July 31, 2013

Denver Wrap Up & Setting the Stage to Make Critical Down Syndrome Research Happen

Here I am, more than a week past the Denver NDSC conference (sorry, can't bring myself to call it a convention - I just can't get past the negative stereotypes of middle-aged men in polyester suits learning how to flog vacuum parts, or 20-and-30-somethings dressed like comic characters, extolling the virtues of living in their parents' basements...), and I still had not yet written my own recap of the event, so here it is...

I went to Denver on my own this year, funding my flight with points from Expedia gained by all the travel bookings I've done at work over the past 12 months, and sharing a hotel room for 2 nights with 3 other women to keep costs down.  (Anyone who thinks 4 women can't share a bathroom and make a shower schedule work efficiently could learn a thing or two from us!)  I would have loved to have had Samantha with me, but I really wanted to be able to attend some of the sessions unencumbered.  There's always next year for that... 

After poring over the agenda in the days beforehand, I finally managed to map out what I wanted to see and hear, and saved aside some additional hours to help out at the IDSC table, where I knew I'd get to meet and mingle with lots of great people and give information about the organization to anyone who stopped by.  The sessions I chose were the Blogger's sharing session on Friday afternoon, the DSRTF session on Saturday morning, Global after that, and Alzheimer's research after that.  Sunday I reserved for the film festival, to see "Punk Syndrome," a documentary about a Finnish punk band comprised of 4 men with intellectual disabilities, including one, the drummer, who had Down syndrome.  The film was good, even if it was about 40 minutes too long...

One of the major highlights was getting to meet so many people I've known for so long through blogging, including, amongst SO many others, Kecia, Cammie, Monica, Renee, Melissa, Amy, Denise, Cate, Jawanda and Kacey, and getting to see Linda, Chrystal and Lisa again (I'm not linking anyone to their blogs here, because I can't remember who blogs anonymously and who doesn't and don't want to blow anyone's cover).  Oh, man, I hate writing who I saw, who I met, etc., because I'm missing so many others here and feel super guilty, and there were too many Facebook friends to recount, as well.  Maybe I shouldn't have listed anyone at all...yikes...



Our "We Miss You" message to Rochelle, who couldn't be there.

At the Blogger's sharing session

I didn't take many notes during the sessions, although I did learn a lot about research funding, mouse models and the fact that people with rheumatoid arthritis generally don't get Alzheimer's!  (I'd started to zone out during that session, but with those words I heard a collective gasp in the room as everyone jumped to attention and started scribbling notes furiously.)  I'll take a dose of rheumatoid arthritis with a prescription of Humira on the side, please, Doc...

On the heels of the conference, and totally relevant to much of what I listened to, much of what people were talking about there, something else that I want to share with you all is this exciting initiative, ONE21, which will be launching in just a few short weeks on 8/21.  Please read the info below, and visit the web site to stay on top of the details as they unfold!

"ONE21 is a new, national initiative of parents, researchers and other advocates for Down syndrome coming together for a common goal:  to give Ds research the support - and voice - that it so urgently needs. 
 
Research is not about finding a cure.  It's about developing breakthrough therapies and best practices that will help families better manage the host of chronic illnesses and other challenges that typically affect people with Ds each day.  
 
The harsh truth, however, is that Ds researchers lack the most basic tools and capabilities to advance their work to the next level.  Without them, we can't move from basic research to clinic trials to drug therapies that can improve our children's quality of life.
 
If you believe research can be a gateway to helping our loved ones with Ds live longer, healthier and more vibrant lives, then join us at www.ONE21.org." 

 

7 comments:

Lisa said...

It sounds like there was a lot to take in at the "conference" (funny description of "convention" above, and lots of people to meet. Thanks for the recap! There seems to be a lot of discussion and activity in the Ds community right now--pulsing like I haven't seen in recent years with several important issues swirling (research, prenatal testing, and a shift from advocacy to activism, in particular). I am interested and excited to see where this current takes us, and whether parents and other advocates/advocacy groups and researchers can figure out how to work in concert for the Ds movement. ONE21 will be a great way to bring us all together.

Beth @ Hope And Coffee said...

I am going to get to this conference one of these years.

Kerri Ames said...

I have a friend who suffers from RA, she has since a teen. She said, great not only do I have to be in pain I'm not going to be allowed to forget about it :)

Becca said...

That just made me laugh out loud, Kerri!!!

Rochelle said...

Glad you had such a great time. Again, thank you for my picture, that was the best cheer me up ever!

P said...

One of my highlights was buying your daughters POSTER and my grand schemes to post it everywhere...Thanks for the info and let's get mediators whatever is needed cause this strife and passionate disagreement to fight to bitter end and kick well-respected members off the board (Dr Skotko) for disagreeing with our own funded hard work (prenatal brochure) is beyond unacceptable to many of us.

P said...

Thrilled that other people take note of the exceptions!!

The thurs medical roundtable is supposed to be available online which might have even expanded info on those emerging & confusing medical & research topics too.