UOAA Advocacy on the Hill

[To Dream a Dream]

https://www.ostomy.org/uoaa-advocates-m ... -the-hill/

In view of what has been occurring on the national scene lately & its tremendous impact on both the medical community & the country's lawgivers, the above link is well worth a look. A big 'thank you' to all of our UOAA advocates who serve tirelessly in this effort.

[Diane C]

Agree To Dream,

VERY worthwhile although I'm unsure about the Federal health budget right NOW. Since I live in Arlington, VA, I used to participate in this activity and it meant a LOT to me. Unfortunately, surgery prevented me from joining this year.

However, I do have a MAJOR gripe. My condition goes back to inherited pelvic floor sydrome with severe constipation and distention. My father suffered with this literally to his dying day. The last year that I participated, I was stunned to find out that my advocacy work was no longer supporting research of this problem. NIH had reorganized. The Digestive Disease National Coalition advocates for increased funding for the NIDDKD -- National Institute of Diabetes and Digestive and Kidney Diseases. Yes, research into these diseases is ultra-important and I don't think ostomates, in general, can really rally around any other Institute than this one. And over the years, my issues extended to digestive disease ones. https://www.niddk.nih.gov/

The last year I participated, before heading to the Hill, during a discussion, I raised my hand as nothing had been said about advances in research related to pelvic floor disorder. There were murmers and someone said I'd receive a reply later. Someone drew me aside and told me that now this medical problem that affects women and MEN and girls and BOYS had been placed in NIH's Eunice Kennedy Shriver National Institute of Child Health and Human Development. This Institute's mission is: "to lead research and training to understand human development, improve reproductive health, enhance the lives of children and adolescents, and optimize abilities for all." The bulk of this Institute focuses on maternal health and child development. I don't feel that pelvic floor problems belong in this Institute and wonder how much research funding they'll receive there. Maybe a political decision -- who knows? If you click on this link, you'll see that the primary focus is on women although there is info pertinent to men with a link to the NIDDKD and fecal incontinence which I never experienced: https://www.nichd.nih.gov/health/topics ... ditioninfo

So, while I might write to the NIH about this and my legislators (not this month or next), I'll continue to support a different, smaller organization whose newsletter first identified my health issue: The International Foundation for Gastrointestinal Disorders or IFFGD.org. They operate on a shoestring and provide fabulous, updated information. IFFDG does advocacy work WITH the DDNC and other organizations. Here's a link that focuses on my specific health problems: https://iffgd.org/gi-disorders/lower-gi-disorders.html If your condition is covered by this group, I strongly recommend that you donate to them. https://iffgd.org/get-involved/make-a-donation.html

Thanks for hearing me out! Advocacy is SO important. The squeaky wheel gets the attention although I might wait until this virus is on the other side.