It's a New Year!

Running Update:

January to date:

Run/elliptical     102.4 mi             16:05:00

Swim                   8.8 mi                  6:14:00

Happy New year, everyone!  It’s a brand new year of advocating, fund-raising, and racing to help improve the lives of people living with neurofibromatosis!

I’ve been working with a trainer/physical therapist and am optimistic my knee will be strong enough to handle our race schedule. 

Our spring 2024 events:

New York City Half Marathon—Sunday, March 17

Cheshire Half Marathon—Sunday, April 21

Our fall 2024 events:

New Haven Road Race Half Marathon—Monday, September 2

Berlin Marathon—Sunday, September 29

Philadelphia Half Marathon—Saturday, November 23

Feel free to donate here to kick off our 2024 fund-raising for the Children’s Tumor Foundation!

www.KRath4Jane.com

 

NF Update:

Late last year I joined another effort to help find a cure for NF.  I became a patient representative for REiNS, Response Evaluation in Neurofibromatosis and Schwannomatosis (https://ccrod.cancer.gov/confluence/display/REINS/Home).

The REiNS group is a collaboration between NF researchers, patients, and other members of the NF community to establish standards for how to evaluate new NF treatments.  Without agreed-upon standards for evaluating, say, how a new medication affects a neurofibroma, it can be hard to compare treatments.  For a simple example, if one study showed that Medicine X reduced the size of a tumor, but another study showed that Medicine Y reduced how often a tumor needed surgery, it’s difficult to tell which treatment is better.

This is from the REiNS website:

 “Most early NF clinical trials used study designs similar to those used in cancer trials; however, because of differences in disease symptoms and tumor growth compared to solid cancers, there is a need for new designs that are better suited to NF. The Response Evaluation in Neurofibromatosis and Schwannomatosis (REiNS) International Collaboration was established in 2011 to reach agreement within the NF community about the design of future trials, with an emphasis on measures of response to treatment, also known as endpoints.”

I’m looking forward to learning and contributing!

Jane Update:

The big news this week:  Jane got her driver’s permit!  She’ll be starting Driver’s Ed next week.  In Connecticut, once you pass the permit test you have to attend 30 hours of classroom instruction and have at least 40 hours of behind-the-wheel, on-the-road training before you can take the road test to get your license.  Jane’s going to be busy!