Autism Research Program (2020 Edition)

 It's that time of year again.  Despite my having served in this program for three years and that usually being it, they called on me for the fourth year to fill in for someone who had to drop out.  

The TL;DR of the program is: "When the US isn't at war, X amount of military money gets put into various research programs to support the troops and the US public.  The ARP is one such program, and there's another for breast cancer, and like three dozen more.  Unlike most research programs, the ARP and others include members of the public in their rating panels.  This is so the approved and funded research is not only scientifically valid, but also useful to the community.  

This inclusion of people affected by the condition is not the norm, by the way.  Typically they ask scientists, and only scientists, what research is worth funding.  It's a trend that's shockingly forward-thinking for the US government, and one I hope to see more in years to come.

This year, unlike previous years, everything was done over video and voice calls.  Typically this program involves needing to fly to near Washington DC to meet with everyone in person, but because of the coronavirus mucking everything up, that wasn't an option.  

I have nothing positive to say about being on a Zoom call for 5 hours a day, but we did, at least, get the work done.  I have to say, I much prefer the in-person experience.  It's easier to get people to see you as a fellow human and recognize the validity of your experience if they have to look at your face.  

The in-person experience also makes people more able to function as a team, in the main because there's usually time at meals to chat and mix.  In the past I've sought out a particular bioethicist because of her outstanding insight into not only the ethics, but also the needs of the community.  There was no opportunity for that this year.  It was a pity.  

Still, the support staff handled the difficulties of the all-virtual conference with grace and zero lost tempers.  All the work got done.  As usual, I was Opinionated and more critical than most people in the room.  I like to think my lack of rose-tinted lenses makes the discussion more objective, and I suppose the fact that they keep inviting me back at least lends itself to supporting that opinion. :3

Anyway, the official press release is below.  I took great satisfaction in amending their suggested "he/she" to "they" as befitting my gender of "no thanks."  They can't stop me, and it's more accurate anyway.  

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SCIENTIFIC PEER REVIEW OF CONGRESSIONALLY DIRECTED MEDICAL RESEARCH PROGRAMS’ AUTISM RESEARCH PROGRAM FOR THE DEPARTMENT OF DEFENSE

The Congressionally Directed Medical Research Programs’ (CDMRP), Autism Research Program (ARP) consumer advocate Sarah Frisch recently participated in the evaluation of research applications submitted to the ARP. Sarah was nominated for participation in the program by Autism Support of Kent County, in western Michigan. As a consumer reviewer, they were a full voting member, (along with prominent scientists) at meetings to help determine how the $15 million appropriated by Congress for Fiscal Year 2020 will be spent on autism research.

Consumer reviewers are asked to represent the collective view of patients by preparing comments on the impact of the research on issues such as diagnosis, treatment, and quality of life. When commenting on serving as a consumer reviewer, Sarah said, “It's a challenging and lengthy process, but highly rewarding.”

Consumer advocates and scientists have worked together in this unique partnership to evaluate the merit of research applications since FY07. COL Sarah B. Goldman, Director of the CDMRP, expressed her appreciation for the consumer advocates’ hard work. “Integrating consumer perspectives into our decision-making process brings energy and focus to our research programs. Patients, caregivers, family members, and advocates help us keep our efforts centered around what is truly important to those impacted. We very much value this critical input from our consumers who help ensure that CDMRP’s work remains critical and relevant,” she said.

Scientists applying propose to conduct innovative research that advances the understanding of autism spectrum disorders and leads to improved outcomes for Service Members, their families, and the American public. The ARP fills important gaps not addressed by other funding agencies by supporting groundbreaking research while encouraging out-of-the-box thinking.

More information about the CDMRP’s ARP is available at the website: https://cdmrp.army.mil/arp/default.

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Media Contact: 

Kate Poindexter
Public Affairs Specialist
Ripple Effect
Supporting the Congressionally Directed Medical Research Programs,
USAMRDC
301-619-7783
Kathleen.poindexter.ctr@mail.mil