Gastroparesis Awareness Month August 2019: #RealGP

August is Gastroparesis Awareness Month, and this year, we are launching a #RealGP campaign to help highlight some of the issues in our community.

The #RealGP campaign seeks to dispel common myths surrounding Gastroparesis and illustrate the true physical, mental/emotional, and financial impact of this illness upon patients and their loved ones.

To make this effort a success, we will need your help! Your contributions can take several forms:

• Photos depicting your GP reality
• Statements and memes contrasting common myths (such as all GP patients are thin) with your personal experience
• Stories of struggle with issues most people do not see (making the "invisible," visible, in other words)
• Discussion of the mental/emotional aspects of this illness which are rarely (or poorly) addressed
• Examples of financial hardships -- insurance, medical care, prescription costs, lack of employment, difficulty establishing disability, etc.

The manner and subject of your participation are only limited by your imagination, and this list is not exhaustive.  Please use the hashtag "#RealGP when sharing. Be creative and help us make an impact for our GP community!

Photo courtesy of Ms. Corina Castillo. If you would like a customized #RealGP frame, please comment on our community page post at https://www.facebook.com/GastroparesisFighting4Change/photos/a.1553567304910841/2359457690988461/?type=3&theater.

VIRTUAL ADVOCACY DAY

When: July 23, 2019

Where: Anywhere in the US

Purpose: Support HR 3396

This July 23, 2019, the Gastroparesis community invites you to support the millions of patients and their loved ones affected by Functional Gastrointestinal and Motility Disorders.

These disorders, which include Gastroparesis, Irritable Bowel Syndrome, Dyspepsia, GERD, and numerous other conditions, are frequently debilitating, and sometimes life-threatening, and they impact the physical, mental, emotional, social, and financial well-being of those affected. FGIMDs are chronic illnesses which impact people of all ages, genders, races, and socioeconomic backgrounds; yet there are often few (or no) effective treatments or cures, and the limited available treatment options come with serious side effects and risks. 

Please contact your congressional representatives in the House and request that they cosponsor the Functional Gastrointestinal and Motility Disorders Research Enhancement Act of 2019 (H.R. 3396) and ask your senators to introduce a companion bill. 

This nonpartisan, budget-neutral legislation would promote awareness and expand educational efforts on our behalf and direct much-needed research funds to our communities so that we might finally be granted better, more effective treatments or cures.  You can find the text of the bill at https://www.congress.gov/bill/116th-congress/house-bill/3396.

You may call, write, or e-mail your representatives.  You can find the names and contact information of your representatives at https://www.govtrack.us/congress/members.  Please consider the following talking points when contacting your representatives: 

• Identify yourself as a constituent and be direct about the purpose of your call/letter/e-mail. Ask to speak with the representative’s healthcare advisor if possible. 

• Mention the bill by name and/or number and let your representatives know its purpose.
• Briefly tell your personal story.
• Mention that FGIMDs affect millions of patients and their loved ones.
• Explain that the bill would direct potentially life-saving research funds to these communities in the hopes of finding effective treatments and cures and create “Centers of Excellence” designed to educate and promote awareness of these devastating illnesses.
• Point out that the legislation is budget-neutral (or does not incur additional costs or deficits). 

• Thank your representative for his/her time and consideration and make certain you have left your contact information in case you can provide additional input.

If your representative would like to pursue co-sponsorship, you can direct your representative to contact Mr. Ben Steinhafel, in Rep. James Sensenbrenner’s office, at ben.steinhafel@mail.house.gov and/or Ms. Carol Frauman, in Rep. Gwen Moore’s office, at caroline.frauman@mail.house.gov. 

Thank you so much for lifTing YOUR VOICES!