Steering Committee Meeting Minutes Tuesday, July 23, 2013

Steering Committee Meeting Minutes Tuesday, July 23, 2013

Group C: Community Supports

Matt Janicki Attending

Larry Force Absent

Nancy Jokinen Regret

Phil McCallion Absent

Group S: Screening

Lucy Esralew Regret

Lin Nelson Regret

Melissa ttending

Group H: Health Care

Ron Lucchino Absent

Baldev Singh Absent

Kathy Service ttending

tending

Kathie ttending

Seth Attending

Dawna ttending

Nabih egret

Mike ttending

Advocacy

Mary Hogan Regret

Leone Attending

Kathy bsent

Sara Absent

1) Group T

Kathie Bishop spoke about the meeting of July 30 and July 31, 2013 at Lucanus Developmental Center, Fort Lauderdale, FL. 35 participants have registered. There will be five breakout groups. She has four facilitators with an additional one needed. Melissa agreed to be the fifth facilitator. Recorders for each group are also needed. They will be prioritizing the level 1 curriculum and are targeting it to be complete by 12/31/13. The organizers and facilitators will develop focused questions for the breakout groups. Kathie has heard from many organizations expressing interest in participating and collaborating in the curriculum field studies and assist in the delivery and marketing of the products developed. She highlighted the need to prepare a business plan to insure the delivery and marketing of the products. She also noted the NTG will continue to assume a leadership role going forward.

2) Group S

Melissa saw Lucy’s article in the NADD Bulletin regarding efforts of Group S.

3) Group H

Seth spoke of the Likert-based scale he is using in his office and the developmental centers. Once the diagnosis of Dementia is made, this could be used as a serial tasking/assessment tool.

Julie Moran's article has been accepted for publication by the Mayo Clinic and is “in press”. The journals are expensive and the NTG needs to determine a way to get the articles on the website for all the members and then to determine what we will do with it.

Mike Rafii works at UCSD which has numerous trials with adults with Down syndrome. One is a medication enhance cognition in adults 18 to 30. Another is an anti-amyloid medication in older adults with Down syndrome. All studies are FDA approved. UCSD is also running a study on the effects of yoga on anxiety, depression and agitation. Mike is also conducting a study of the biomarkers for sake of understanding the trajectory of healthy and unhealthy brain aging of adults with Down syndrome. This study is of great interest to many groups including NIH and advocacy groups (for example, DSA, NDSS, NDSC, Lejeune Foundation).

Seth asked how NTG could help in this longitudinal study. Mike said many of our members could be a source of referrals for this research and increasing the visibility of the NTG in the research community. NIH funds Down syndrome research to $20 million per year. To keep the funding in perspective, Cancer research is $5 billion per year while Alzheimer’s disease research is $500 million per year. Down syndrome is still listed as a “rare” disease. LEAD may be a way to increase the dollars for research.

4) Is there interest in forming another group focused on research? This would be Group R. Seth will initiate some dialogue about this. Kathie Bishop said the webinar Mike conducted was very helpful and this would be a way to encourage more discussion.

5) CARF’s white paper on IDD/DD and dementia was sent out yesterday. They are requesting feedback by tomorrow. This is just a beginning and not the end of the subject. They want to know what the next steps are.

6) LEAD (Leaders Engaged in Alzheimer's Disease)

They have monthly meetings. Matt and Baldev have participated. LEAD puts together petitions

for funding. NTG is encouraging that IDD be included. NTG needs to have a member attending each month's meeting. The meeting is the second Wednesday of the month from 10 AM to 11 AM. Seth will send around a list of the dates and ask members of the Steering Committee to sign up.

7) Larry Clauson asked the NTG provide a speaker for November 1 webinar for DD Council, Arizona. Seth will ask Larry for exact specifications and timing so Seth can pass a note the NTG Steering Committee for a volunteer.

8) NAPA task force update

It ties into our engagement with NAIDD. There may be a disconnect with that. Sharon Lewis is the person we need to talk to and she has been dealing with medical issues.

9) Seth wrote an article on NTG for Health Affairs and they invited us to submit an abstract by August 1, 2013 on Alzheimer’s related issues (models of care and comparative pieces, state and local approaches, primary prevention). If anyone is interested please let Seth know.

10) NDSS update

Sarah Weir has not been on any of our calls. Mary Hogan will be back soon and will discuss this with her.

11) Kathie Bishop regarding webinars

After the meeting in Fort Lauderdale, Kathie would like to develop a webinar series on FAMILY CAREGIVING to be held in the fall. This would be on a limited budget with revenue possibility.

To promote the Level 1, we could do a series of webinars to tie into Group T.

Matt noted partnering on webinars with other organizations would be a good idea.

Seth noted grants from Special Hope might be a source of funds but noted it must be tied into a USED and training.

12) Workshop Updates

Virginia, November 2013

Matt did a presentation for DD Council and there may be more to do for DD councils.

13) NTG Book Chapter

Rubin & Crocker, Third Edition – Carl Tyler asked Seth to do a chapter on aging and dementia. The deadline is December 1, 2013. Matt and Lucy have agreed to help Seth write the chapter.

14) Kathy Service presented the poster at the Alzheimer’s Association International Conference 2013 (AAIC) and distributed brochures.

15) The next meeting will be Thursday, August 22, 2013 at 8 PM EDT

Respectfully submitted,

Leone Murphy