Hi, all. I wanted you to know that I've received one response,
so far, from the four packets I sent out with my thyroid petition
and cover letter, not too long ago. This response was the
result of my sending a packet off to Xavier Becerra, who's the
U.S. Secretary of the Dept. of Health and Human Services.
Although it sounds promising, I'm not counting on anything until
we get further along with this...because I've dealt with parts of this
dept. before and was told certain things regarding thyroid that
didn't go anywhere. That's why I continue to gather petition
signatures....I may well need them. There still may be a lot
more work to do, before we actually make progress.
Still, whoever actually wrote me back really took the time to
give a thoughtful & caring response. You can tell by the way they
answered that they truly did read what I wrote them, and that
it seemed to make some kind of impact on them. That's more
than I usually get, so I give them credit for that.
I can't figure out how to post the letter properly on this petition
website, so I'll just type out the most important parts, so you can
see. All of you who've supported this petition are "stockholders"
in this, so you deserve to know where things stand, right now.
Here's the bulk of the letter, then, that I received--
Dear Starr D:
Thank you for contacting Xavier Becerra, J.D., Secretary of the Dept.
of Health & Human Services, sharing a petition that you created in
memory of your brother, Jordan, calling for reforms in thyroid care
that includes more funding for research into new and innovative
treatments for thyroid problems, requiring thyroid testing of all
children by age 12, and more education for health care providers
about the importance of treating thyroid problems. Your letter was
forwarded to the National Institute of Diabetes and Digestive and
Kidney Diseases (NIDDK), part of the National Institutes of Health
(NIH), with primary responsibility for thyroid disease research.
Please accept our deepest condolences on the loss of Jordan, your
mother, father, and grandmother. We are sorry to hear about the
challenges your family experienced and commend your efforts
to help improve the diagnosis and treatment of thyroid problems
and autoimmune disorders that can cause thyroid problems, such
as Hashimoto's disease and Graves' disease. We share your desire
to improve the quality of care that people who have thyroid disease
receive.
To that end, NIH spent an estimated $1.1 billion on autoimmune
disease research in fiscal year 2023 through funding to researchers
at NIH and other institutions across the country. NIH welcomes
innovative research that will turn discoveries into better health.
Please note that while NIH continues to fund meritorious projects,
we acknowledge there are more projects we can't fund in this
highly competitive environment.
NIDDK supports a range of thyroid diseases research that focuses
on ways to further improve diagnosis and treatments. You may read
about NIH-funded studies in thyroid diseases through the
RePORTER database. A search for thyroid disease studies produced
the following results:
https://reporter.nih.gov/search/e7B-0KTKWUuQd4LuMuu0ww/projects
(I did the best I could, typing that link! It should be right...but if not,
I tried!) Back to the letter....
We are inspired by your efforts and courage to talk about your
personal challenges. We are committed to supporting research that
will help identify ways to improve health and quality of life for
people living with thyroid problems.
We wish you continued strength and hope you find this information
helpful.
Sincerely,
Office of Communications and Public Liaison
National Institute of Diabetes and Digestive and Kidney Diseases
A specific person didn't actually sign it...but there you have it.
I still haven't heard back anything yet from the mailings I sent to
the White House, my Senator, and my US. Representative in
Congress. So, we'll see how that goes. I'll mail off more packets,
in the future. Can't afford to, this month. I pay for that, myself--
the money doesn't come from the petition website, or anything.
But for now, we can continue to try to get more signatures.
It'd be great if we could hit 10,000. We're at 7, 576, right now.
If you know anyone who might sign, and you'd like to share,
petition link is here
https://www.change.org/ThyoidBetterTreatment
Thank you for all your support, so far. I really appreciate it,
and I know my brother Jordan would, too. I will close this
by posting my favorite photo of Jordan & me when we
were kids. Best to all of you, and I'll keep you posted on
any new developments.
from Jordan's sister, Starr D.