close
  • Mega Menu Column
    • Facebook
    • Twitter
    • LinkedIn
    • Instagram
    • Donate
    • Become A Member
  • Home
  • About Us
    • Mission/Overview
    • Our Team
      • Board of Directors
      • Medical Advisors
      • Dental Advisory Council
      • Staff & Coaches
    • Financials
    • Contact Us
  • Living With P/P
    • Understanding P/P
    • All About Pemphigus (Patient Edition)
    • Diagnosis
    • Treatments
    • Physicians Referral
    • Peer Support
      • Patient Education Series
      • Discussion Forum
      • Local Support
    • My Story
    • Ask A Coach
    • Discussion Forum
  • Research
    • 2018 Pre-IID Pemphigus and Pemphigoid Symposium
    • Research Grants
    • Clinical Trials
    • Natural History Study (Patient Registry)
    • Clinically Speaking
      • All About Pemphigus (Physician Edition)
      • Pemphigoid
      • Treatments
      • Complications & Side Effects
      • Risk Factors
      • Diagnostic Testing
      • Current Consensus of Disease Outcomes
      • Prevention & Psychology
  • Get Involved
    • Healing Heroes
    • Volunteer
    • Awareness
    • Support The IPPF
      • Make A Donation
      • Healing Heroes
      • Planned Giving
      • Other Ways To Give
    • #healourskin
    • Continuing Medical Education
    • Peer Support
      • Patient Education Series
      • Discussion Forum
      • Ask A Coach
      • Local Support
    • Host A Fundraiser
    • Annual Patient Conferences
  • News
    • PemPress
    • Quarterly
    • Events
    • The Coaches Corner
  •  Facebook
  •  Twitter
  •  Instagram
  • DONATE
Pemphigus Pemphigoid Foundation logoPemphigus Pemphigoid Foundation logo
  • Menu
  • About Us
    • Mission/Overview
    • Our Team
      • Board of Directors
      • Medical Advisors
      • Dental Advisory Council
      • Staff & Coaches
    • Financials
    • Employment
    • Contact Us
  • Living With P/P
    • Understanding P/P
    • All About Pemphigus (Patient Edition)
    • Diagnosis
    • Treatments
    • Physicians Referral
    • Prescription Assistance
    • Peer Support
      • Patient Education Series
      • Discussion Forum
      • Local Support
    • My Story
    • Ask A Coach
    • Discussion Forum
  • Research
    • 2018 Pre-IID Pemphigus and Pemphigoid Symposium
    • Research Grants
    • Clinical Trials
      • What is it?
      • Should I Volunteer?
      • What are my rights?
      • Definitions
    • Natural History Study (Patient Registry)
    • Clinically Speaking
      • All About Pemphigus (Physician Edition)
      • Pemphigoid
      • Treatments
      • Complications & Side Effects
      • Risk Factors
      • Diagnostic Testing
      • Current Consensus of Disease Outcomes
      • Prevention & Psychology
  • Get Involved
    • Healing Heroes
    • IPPF Web Store
    • Advocacy
      • Becoming a Self Advocate
      • Advocacy in Action!
      • Advocacy Tools and Resources
    • Awareness
    • Support The IPPF
      • Ways to Support
      • Make A Donation
      • Healing Heroes
      • Planned Giving
      • Host A Fundraiser
      • Volunteer
    • #healourskin
    • Continuing Medical Education
    • Peer Support
      • Patient Education Series
      • Discussion Forum
      • Local Support
      • Ask A Coach
    • Annual Patient Conferences
  • News
    • PemPress
    • Quarterly
    • Events
    • The Coaches Corner

Rally for Medical Research

By Sarah Gordon,

Return to Previous Page | PemPress Home

Posted by Sarah Gordon

On October 12, 2016

I truly felt that our representatives were listening closely when I told them my story of being diagnosed with and treated for pemphigus vulgaris.

On Thursday, September 22, I joined 350 advocates on Capitol Hill for the Rally for Medical Research. Our main goal was to encourage members of Congress to continue robust, sustained, and predictable funding for the National Institutes of Health (NIH). Because I live in Washington, DC, a city without a vote in Congress, I was assigned to the group from Montana.

Along with a University of Montana biologist and a cancer research advocate, I met with Sens. Jon Tester and Steve Daines, and Rep. Ryan Zinke. All three members were supportive of our efforts to maintain NIH funding, especially Sen. Tester, who seemed to have a vested interest in medical research. In addition to our general request for NIH funding, I stressed the importance of cutting edge research on rare diseases and emphasized the significance of the Open Act, which incentivizes pharmaceutical companies to make treatments available off-label.

Of my three visits to Capitol Hill as a rare disease advocate, this is the first time I met with the members themselves rather than only their staff. It was a humbling experience but also a powerful one. I truly felt that our representatives were listening closely when I told them my story of being diagnosed with and treated for pemphigus vulgaris. Meeting our lawmakers in person and telling our stories makes all the difference!

  • Facebook
  • Twitter
  • Google+
  • Pinterest
  • LinkedIn

Related

Sarah Gordon
Sarah Gordon
Sarah Gordon is an art historian and author. She teaches at American University and Photoworks at Glen Echo, and she lectures at the National Gallery of Art. Sarah was diagnosed with pemphigus vulgaris in 2007. She lives in Washington, DC, with her husband and two sons.

Tagged:Advocacycapitol hillNational Institutes of Healthpemphigoidpemphigusrare disease

Return to Previous Page | PemPress Home

Post navigation

← Previous“Coaches Corner” – When Tapering From Prednisone
NextGreetings from the New IPPF Outreach Manager: Becky Strong →

Leave a Reply Cancel reply

You must be logged in to post a comment.

  • P/P Awareness Campaign
  • Disease Registry
  • Ask A Coach
  • Patients & Caregivers
  • For Medical Professionals
  • Clinical Trials
  • Treatments
  • @healourskin April 17, 2018

    The latest Pemphigus & Pemphigoid Weekly! paper.li/healourskin/13… Thanks to @diabetesfuna @GlobalGenes @Immunotx_papers #raredisease #nord

  • @healourskin April 11, 2018

    Save the date! 2018 Annual Patient Conference Raleigh-Durham, NC October 12-14 Hosted by Donna Culton, MD (UNC Depa… twitter.com/i/web/status/9…

  • @healourskin April 10, 2018

    The latest Pemphigus & Pemphigoid Weekly! paper.li/healourskin/13… Thanks to @HSP_90 @RareDiseases @ThriveChiroFL #nord #progress

  • @healourskin April 3, 2018

    The latest Pemphigus & Pemphigoid Weekly! paper.li/healourskin/13… Thanks to @RareDiseases @TregCellRadar @ImmunePharma #raredisease #nord

  • @healourskin March 29, 2018

    Checkout the latest from PemPress: Strategies for Managing Pemphigus and Pemphigoid ift.tt/2GgsIux… twitter.com/i/web/status/9…

  • Volunteer
  • Careers
  • Donate
  • News
  • PemPress
  • Forums
  • Contact

About IPPF

The International Pemphigus & Pemphigoid Foundation’s most important objectives are to provide patients and doctors worldwide with information about pemphigus and pemphigoid, and to provide patients and their caregivers much needed comfort and support so they can continue to live active, productive lives.
Read more »

Contact Us

International Pemphigus & Pemphigoid Foundation
1331 Garden Highway, Ste 100
Sacramento, CA 95833
United States of America

info@pemphigus.org
(855) 473-6744
(916) 922-1298

© 2017 International Pemphigus & Pemphigoid Foundation · All rights reserved.
Privacy Policy | Terms of Use | Sitemap
Website design and implementation by Uptown Studios.
en English
ar العربيةbn বাংলাzh-CN 简体中文en Englishfr Françaisde Deutschel Ελληνικάiw עִבְרִיתhi हिन्दीit Italianoja 日本語fa فارسیpt Portuguêspa ਪੰਜਾਬੀru Русскийes Españolth ไทยvi Tiếng Việt