Neurofibromatosis Coalition at Washington, DC

Former AdvocureNF2 members John Manth (and family), as well as AdvoureNF2 President Barbara Franklin, joined forces with the ‘NF Coalition’ group to lobby Congress in DC (February 2012) for NF research funding in FY13 at both the Neurofibromatosis Research Program in the Congressionally Directed Medical Research Prograns (CDMRP-NFRP), and at the National Institute of Health (NIH).

Lobbying for NF2

Written By: John Manth

John Manth and family at Capitol Hill in DC, 2012 This year 25 people attended the annual trip to Washington DC representing 21 States. Some of the participants where representing regions of the country like the Northeast and Midwest. This is the 4th year that my family has participated in this event. This year my father in law, niece and all three of my children joined me to help get as much support from NY State as possible.

We broke up into two teams and visited 16 members of the House of Representatives from NY State. There are 29 members of the house from NY, so 16 appointments was very good. The remaining 13 members as well as both senators who were not schedules were also visited in between scheduled appointments.

These appointments are called drop-byes and basically you walk into the office and ask to see a staffer from either health or defense. If no one is available you drop off a folder of information as well as your card and take the card of the staffer you would have seen. We were only able to speak with a staffer on 4 of the 15 drop-byes. All of the staffers we spoke to during the 2 days where very interested in our cause seemed somewhat respective to asking the representative to sign our dear colleague’s letter.

CDMRP Meeting

Monday morning Naba Bora gave his usual presentation on the CDMRP-NFRP. All the info he shared can be found on their website.

One interesting item to note is that the NF Clinical Trials Consortium was funded again and NF was included as we were told it would be. The Consortium has to guarantee that there would be at least one NF1 and one NF2 clinical trial started in 2012 or they could lose their funding from the CDMRP.
NIH Meeting

Monday evening Jill Morris Ph.D. Program Director for NINDS did a presentation on NIH’s NF efforts. It was very interesting and I got the impression that she is interested in expanding NIH’s NF efforts. Her presentation (in PowerPoint) is here.
Coalition Meeting

After dinner on Monday evening the Coalition met to discuss the how to prevent NF from being dropped by the CDMRP or the CDMRP from being eliminated from the defense budget. The defense budget is going to be decimated over the next few years and there is a good chance we could lose the CDMRP.

We discussed beginning a large social media campaign trying to get as many people as possible from around the country to e-mail their senators and congressman asking them to support us. A committee was formed and I believe that Barbara is on it, so she can give us updates when available. I think it would be devastating to NF research if we lost the CDMRP, I am not sure if NIH could or would pick up the slack?


The day after I returned I e-mailed every staffer we met with thanking them and asking for their support again. When the Dear Colleagues letter is circulated I will e-mail them all again and ask them to sign.

Final Thoughts

I was very happy with my family’s efforts with the NY delegation and I hope we will have several signers for the upcoming letter of support. I still think we need many more people to go to DC with the Coalition and represent every state. I am not sure how to go about doing this?

For next year:

  1. Who would be interested to go to DC to lobby for more NF research funding?
  2. Who would like to be a consumer reviewer at the CDMRP-NFRP to direct this NF funding?

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