Showing posts with label Advocacy. Show all posts
Showing posts with label Advocacy. Show all posts

Thursday, June 20, 2013

Digestive Health Alliance Advocacy Day

On June 19, I joined Advocates from the Digestive Health Alliance (DHA) and International Foundation for Functional Gastrointestinal Disorders (IFFGD) on Capitol Hill. We met with congressional and senatorial staff to ask for their support of the Functional Gastrointestinal & Motility Disorders Research Enhancement Act of 2013 (H.R. 842). 

You can also help by emailing your member of the U.S. House of Representatives in support of the Functional Gastrointestinal & Motility Disorders Research Enhancement Act of 2013 (H.R. 842). When you reach out as a constituent, you put a face on those affected by functional GI and motility disorders; you add meaning to what could be just another piece of legislation coming across a desk. 

Thank you for your support!

Patient & Family Advocates from Pennsylvania

Crystal Saltrelli, author of Living (Well) with Gastroparesis

Digestive Health Alliance (DHA)
www.dha.org

International Foundation for Functional Gastrointestinal Disorders (IFFGD)
www.iffgd.org

National Digestive Diseases Information Clearinghouse (NDDIC)
http://digestive.niddk.nih.gov/ddiseases/pubs/gastroparesis/index.aspx

Living with Gastroparesis
www.livingwithgastroparesis.com

Cheryl Aaron Memorial Fund
www.cherylsfund.com

My Crazy Colon
www.mycrazycolon.com


Monday, July 16, 2012

#IStandUpFor...Stand Up To Cancer (SU2C)







“Stand Up To Cancer” Returns to Primetime for its Third Star-Studded Broadcast on September 7th
(Source: http://www.standup2cancer.org/press_release/view/stand_up_to_cancer_returns_to_primetime_for_its_third_star_studded_broadcas)





Oscar®-Winning Actress Gwyneth Paltrow to Executive Produce
with Emmy® Award Winner Joel Gallen
Live, One-Hour Fundraising Event to Air
Commercial-Free Simultaneously On ABC, CBS, FOX, NBC and Cable
8:00 PM ET and PT / 7:00 PM CT
www.standup2cancer.org | facebook.com/su2c | Twitter: @SU2C |
Tune-in: http://youtu.be/7O_P_Fr4S1E

Tuesday, June 19, 2012

Digestive Health Alliance Capitol Hill Advocacy Days


"As a nationwide grassroots network our power to create meaningful change is rooted in individuals and families across the country. These advocates use the story of how Functional Gastrointestinal and Motility Disorders (FGIMDs) have impacted their life to educate lawmakers about the conditions and to encourage them to take legislative actions and craft public policies, which support the FGIMDs community. By working together in a coordinated fashion, we leverage the strength of our numbers behind efforts to bolster federal funding for research activities and improve care for patients." (Source: Digestive Health Alliance)

"Each June, Digestive Health Alliance (DHA) dvocates from across the country gather in Washington, DC for a two-day advocacy event. The first day features advocacy training sessions, a review of our legislative agenda, updates on federal research, and a networking dinner. On the second day, advocates travel to Capitol Hill in teams for a series of meetings with congressional staff and Members of Congress to urge support for a legislative agenda focused on bolstering research into FGIMDs and improving patient care." (Source: Digestive Health Alliance)

In 2000, I was diagnosed with Gastroparesis. While my symptoms continue to be debilitating at times, I continue to run whenever possible, including 7 marathons! And, I'm very fortunate to have access to the newest treatments and research.

My daughter and I are traveling to DC to participate in the Digestive Health Alliance Advocacy Day so that we can advocate for bolstering research into functional GI and motility disorders and improving care for patients!