- NancyLombardo, 07 Apr 2009

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NOVEL Steering Committee Meeting March 30, 2009

Agenda:

1) Funding – strategy and plan

Most of the meeting was taken up with this topic. We reviewed the proposals that have been submitted this year:

• NIH Stimulus - Letter of inquiry on Rare Disease Registry Questions - Denied 4/6/09
• NIH Stimulus - Letter of inquiry on Global Health Research And Research Training - Denied 3/16/09
• Genentech - $50K - Supplement to Pfizer - Denied 3/17/09
• Pfizer Patient Portal - $65K - Still Pending
• Pfizer general proposal - $115K - Denied Feldstein Medical Foundation - Letter of Intent - Denied 1/15/09

We discussed the idea of a grant writing team. We have many modular parts that can be pasted together to provide background and overview.

2) Collective overview and next steps

• Kennerdell under peer review – need to complete
• Sadun – needs peer review - Daroff – Peer review?
• Wilhelm – In progress - Winterkorn – in planning
• Wray and Moran – Ongoing

3) Patient portal discussion – We will add the language translations in French, German, Spanish and Hebrew as soon as we get the word from Preston.

New Topics proposed for development at the Patient Portal meeting in November :

• Optic Nerve Sheath Meningioma - Madhu Agarwal has written the first draft

Not yet written:

• Photophobia - Kathleen Digre
• Vertigo - David Newman-Toker
• Nystagmus - Eric Eggenberger or Mark Moster
• CPEO -
• Meniere's - David Newman-Toker
• PSP - William Hills; Larry knows someone too
• Eyelid Myokymia - ??

4) Rare Disease Registry – add more collection instruments Dr. Bosley has submitted the "Unusual Congenital Ocular Motility Disorders" material

5) Discuss the Pfizer project report, if needed (handed out at Board meeting in Tahoe)

6) Jess Halpern – Stereoscopic images using Neotek All agreed that the hardware limitations of this project make it too much of a challenge for NOVEL.

7) Discuss NANOS archives that may be placed on NOVEL We agreed taht beginning with photographs from annual meetings would be a great place to start. We can post them chronologically.