Political Action Alert

We are calling on all Americans to contact their federally elected officials. Your voice does count!

Background

In 2003, working alongside top researchers in the field, GPDA organized the first International Scientific Conference on gastroparesis. This meeting represented GPDA's initial step in an 18-month process urging the National Institutes of Health to fund clinical research into gastroparesis. GPDA, together with our concerned scientists, helped to provide leadership and a voice for our patients. GPDA was happy to see the culmination of this process in the establishment, in 2005, by the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) of the Gastroparesis Clinical Research Consortium (GpCRC).

The consortium consists of 6 centers. The goals of the GpCRC are to perform clinical, epidemiological and therapeutic research into gastroparesis as well as to provide infrastructure that can rapidly and efficiently design and conduct clinical trials for effective medical, surgical, or other interventions for improving treatment of patients with gastroparesis. The consortium—to be funded for 5 years—will carry on until mid-2011.

What will happen to the Gastroparesis Clinical Research Consortium after 2011?

GPDA is worried that in the fiscally tight climate we are currently facing…

GpCRC may not continue to be funded beyond 2011 unless we communicate the vital need for this unique consortium.

Continued funding for GpCRC is not automatic! It will only occur if our patient group keeps our elected officials focused on helping to find a cure for Gastroparesis.

Steps need to be taken now to insure secured funding for 2011. If we sit back to wait and see what happens—it will be too late. Our elected officials need to hear from us now!

Act NOW!

Get visible! Get vocal! Let your elected officials know that the Gastroparesis Clinical Research Consortium needs continued funding beyond 2011.

See our "Political Action Tool Kit" below.

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Is it worth my time and effort?

Yes!

Right now, legislators in the US House and Senate have passed President Obama's stimulus package worth close to one trillion dollars.

The Senate tucked in approximately $10-billion allocation for the National Institutes of Health.

Our patient community needs to keep gastroparesis on the radar screen to insure continuation of clinical research funding for gastroparesis.

What can you do?

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If all you are able to do is mail in a post card, please e-mail GPDA for some political action post cards. We will mail them out to you. Then, just write-in addresses of your elected official, add a postage stamp and place into a mail box.

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Here is your Political Action Tool Kit and instructions:

1.Print off our Gastroparesis Political Action Fax.

2.Next, write a letter!

       a. A hand written letter is best—remember you will need to fax in your letter, so use black ink, it is easier for the receiver to read it. Here are some points to follow when writing your letter.

Or,

       b. Use our letter as an example—you can cut, paste or add to our letter and personalize it to your own story of life with gastroparesis. Add in the addresses of your elected officials: go to the web sites listed below in point 4 to find your elected official's (Senator and Representative) mailing addresses.

3.Take note of the fax numbers.

4.To find the name, address and fax number for your elected official:

       a. Senators

       b. House of Representatives

5.Print-off your finished letter along with our Political Action Fax and fax these to your elected officials.

6.Also, fax a copy to the Acting Director, Dr. Raynard Kington, of the National Institutes of Health—send to his executive secretariat: Ann Brewer at: Fax: (301) 496-8276

7.Also please send a copy of your letter to the Chairman of the U.S. House of Representative Committee on Appropriations, Dave Obey (WI), as well as the Chairman and Ranking member of the Senate Committee on Labor, Health and Human services.

8.Follow-up with a phone call to the office's of your elected official simply by calling the Capitol switchboard at: 202-224-3121 and ask for the office of the legislator you want to reach. Please be patient, the switchboard is very busy these days with the announcement of the new financial stimulus package,

9.Or—better yet…Follow-up with a personal visit to the regional constituency office of your elected official (information provided on the web sites above). Often, your state legislator has several district offices in your state. Call and make an appointment for a visit and take along your letter.

10.Also, take your story and this campaign to your local media.

Are you interested in going to Washington DC to directly lobby government officials?

If you are interested, please E-mail GPDA.

If we have 10 or more patients/family/friends express interest, GPDA can arrange a gastroparesis Awareness day on Capitol Hill.

Thank you for your help!

Jeanne, Calgary, February 2009

GPDA is a small, truly grassroots, not-for-profit association. Our Board meetings occur around our kitchen table. We have to do things the old-fashioned way: reaching out to you, our patient community, wherever you may be, and asking you to participate through grassroots lobbying (writing letters, calling and visiting the offices of elected officials).

Grassroots lobbying is highly effective because there is no hidden agenda or backdoor funding by corporations—rather, we are the faces of the actual families, loved ones and patients who suffer.

About Jeanne:
Jeanne is a registered nurse and both an American and Canadian Citizen, as are her two children. Both of her children have been ill with gastroparesis for over a decade. Jeanne founded the Gastroparesis and Dysmotilities Association in June 2002. GPDA is a Canadian registered not-for-profit organization.