TSAPO and the AFA Cycling Classic Kids Bike Race, which will be held this Saturday in Clarendon in honor of Ethan, made the news! See http://www.arlingtonconnection.com/news/2015/jun/09/afa-cycling-classic-kids-bike-race-benefit-tay-sac/ and http://www.cyclingclassic.org/kids-races.html for details!
The 2015 Cycling Classic Kids Race is being run in Ethan Klancnik's honor so we're selling t-shirts for the race. It would have been his third birthday the day before the race, so we want to raise awareness for genetic diseases, like Tay-Sachs, in his honor.
JScreen is one of the more extensive genetic testing programs easily available to everyone in America. To learn more and take advantage of this great program, visit JScreen.
Congratulations to Karen for completing your second Marine Corps Marathon and raising over $3400 for TSAPO in honor of Ethan! For final results, please see her fundraising page here. Can you see Ethan in the picture?
A little known fact: The carrier rate for Tay-Sachs disease within the Irish-American population is somewhere in the range of 1 in 50 people to 1 in 150, higher than the average population of 1 in 250. Currently, there is a study at Einstein Medical Center's Genetics Division to determine an accurate carrier rate.
They are looking for more participants for this study that will help "protect future generations of Irish families." If you have at least 3 Irish grandparents and are 18 years or older, you may be eligible to receive FREE carrier screening for Tay-Sachs.
There is a free screening event in Pearl River, New York on Sunday, September 7, 2014 from 11:00 AM to 2:00 PM. See the link below to sign up!
Sign up here!
I spoke about my day on Capitol Hill lobbying for palliative care in a guest blog for the Courageous Parents Network. Read my blog post at http://courageousparentsnetwork.org/my-palliative-care-story-made-it-to-capitol-hill/.
Our good friend Karen is running the Marine Corps Marathon in Washington DC on October 26th in honor of Ethan! And she is raising money to benefit our nonprofit! All proceeds go to our Healthy Families Grant and Genealogical Carrier Programs so we can help other families struggling with Tay-Sachs. Please check out her fundraising page here.
Emily Rapp recently shared her feelings on having another child after losing her son, Ronan, to Tay-Sachs. See it here: http://www.brainchildmag.com/2014/06/what-the-living-do/.
Ethan's Dad, Gordon, was a guest blogger for the Courageous Parents Network. Read his blog post here.