Running Update:
Running
YTD: 108.0 mi 17:12:19
It was a snowy weekend, so I finally got a moment amid the chaos of the current world to update the blog for the first time this year. 2025 had an unexpected start for me—while visiting our Canadian relatives over New Years, I slipped and fell hard on the ice.
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| With Andrea, enjoying the gorgeous view from a hill above Echo Bay, Lake of the Woods |
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| Sad Kristy looking like she was in a bar fight |
I laid low over the holiday, my head and face achy but otherwise apparently fine. It wasn’t until we were back home in Connecticut that I started having trouble with my vision—it turns out the fall had torn and partially detached my retina! Thanks to some fabulous eye doctors, Dr Betsy Swenby and Dr Wayne Larrison, I had urgent laser surgery to repair the tear, and my retina is healing well. (Mom, I didn’t tell you because I knew you’d worry—see? I’m OK!)
I lost a bit of training time during my recovery—I wasn’t allowed to run or swim while my eye healed—but I think I’m finally back on track for my spring races.
This spring, I’ll be running
- the New York City Half Marathon on Sunday, March 16
- the London Marathon on Sunday, April 27
both races to support the Children’s Tumor Foundation with a goal to #endNF!
You don’t even have to get up off the couch--All YOU need to do is click the link below and DONATE!
NF Update:
In January, I wrote several letters to my representatives in Congress for the NF Network Advocacy Program in support of funding for NF research. While the Children’s Tumor Foundation, Neurofibromatosis Northeast and other private NF organizations provide some funding, the bulk of NF research funding comes from government grants. For example, in 2022, over 40% of all research labs were funded by government awarded grants, while only 8% of labs had foundation-based grants.
Some
background on NF research funding.
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| Graphic courtesy of Neurofibromatosis Network |
Since 1996, NF research has been funded by Congress at the Department of Defense (DOD) through a Congressionally Directed Medical Research Programs (CDMRP) called Neurofibromatosis Research Program (NFRP) and through the National Institutes of Health (NIH).
From NF Network:
“The NF Network Advocacy Program is the leading national neurofibromatosis advocacy program working to secure federal funds for neurofibromatosis research. The program consists of several NF patient advocacy organizations coming together as one voice on Capitol Hill, educating Congress on the importance of funds for NF research."
Each year, during Hill Visit days, the NF Network Advocacy Program participants educate congressional offices about the importance of federal funding for NF
research. Advocates participating in this program have been the voice of
the NF community on Capitol Hill for over 20 years, and have been instrumental
in generating over $600 million dedicated to NF research.
"NF advocates urge their senators and representatives to
support NF research funding through the CDMRP and the NIH. Continued
congressional funding is critical to the clinical trials that may ultimately
lead to a treatment and cure for NF and related disorders. It is with your
support and the help of our NF advocates that the funding programs become possible.”
Here is my letter to our US Representative, Joe Courtney:
19 January 2025
Dear Congressman Courtney,
Seven years ago, in April 2017, my daughter Jane and I visited your Washington DC office. We were in the area for one of Jane’s semi-annual check-ups at the National Institutes of Health, and you graciously invited us to meet with you and share Jane’s story. She still has your Challenge Coin!
Jane was diagnosed as an infant with a rare genetic condition called neurofibromatosis (NF). NF causes tumors to grow on any nerve tissue, among many other complications, and has no cure. She has a large, invasive tumor (a plexiform neurofibroma) on the right side of her head and neck, including her cheek, mouth and ear. It not only affects the function of these organs, leading to medical difficulties; but it affects her appearance, leading to social challenges. There are very few specialists in NF, so we must travel from Connecticut to the National Institutes of Health in Bethesda, MD twice a year for medical testing and appointments. Jane had her first MRI at age 18 months and has had at least 39 MRI sessions in her short lifetime. To manage her tumor, Jane has been in clinical trials with experimental medications continuously since age three. Each medication has been associated with side effects (such as nausea, headaches, rashes, and infections). In addition to her oncologist at NIH, she has regular appointments at home with a neurologist, an ophthalmologist, an otolaryngologist, and a dermatologist.
Jane was one of the first 24 children in the world to take the chemotherapeutic drug selumetinib in its initial trial back in 2014 and has been on this drug ever since. At the time of our visit to your office in 2017, Jane was 10 years old and had been on selumetinib for three years. Since then, Jane’s tumor has shrunk by almost 40% (!) and selumetinib went on to win FDA approval in 2020. Thanks to her treatments, Jane is now 17 years old, is a senior in high school and has just submitted applications to college.
But we still have more work to do. Selumetinib is not indicated for all NF tumors. Despite being on this medication, Jane has needed two major surgeries, at ages 14 and 16, to remove other NF tumors from her jaw, kidney and mouth. But the success of selumetinib is an example of how funding for NF research helps develop life-changing treatments.
We need your help! For FY 2026, we are seeking $25 million in funding for the Army’s NF Research Program (NFRP) in the FY 2026 DOD Appropriation Bills and inclusion of report language on NF research in the NIH FY 2026 Labor, Health and Human Services, and Education Appropriations Bill.
Thank you in advance for your support.
Sincerely,
Kristina M Rath, MD
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| Jane with her mother and Congressman Courtney in April 2017 |
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| Jane’s senior portrait September 2024 |
I am sorry
to say, in the time since I wrote the above letter, the Trump administration
has withdrawn CDMRP funding information (the CDMRP website is still down, as of this
writing) and slashed the NIH’s funding of indirect research costs. If this continues, many NF research labs will
need to turn to nonprofits and private funding in the very near future.
Otherwise, they will need to cut researchers or risk losing their lab entirely.
With research funds in jeopardy, now more than ever we need your help to
support people living with neurofibromatosis.
