Hi Gators! As many of you know our youngest daughter, Avery, has a disability caused by a genetic disorder. The condition is called CDKL5 and it is extraordinarily rare. A rare disease is one that is classified as affecting less than 200,000 people in the United States - CDKL5 is so rare that there are less than 2,000 WORLD WIDE currently diagnosed. Unfortunately, with a disease so rare it is often difficult to procure funds to drive the necessary research for treatments or a cure. Penn Medicine is hosting the third annual Million Dollar Bike Ride right here in Philadelphia on May 7th in order to raise money for rare disease research. This year CDKL5 has a team. All (100%) of registration and fundraising will go to the Disease Team's research fund. If we are able to raise $20,000 as a team the Orphan Disease Center will match dollar-for-dollar the funds. This money goes directly toward grants to fund research specific to the disease. There are several ways you can help: * 1. Ride and Fundraise. The cost to register and fundraise is only $25 and requires a minimum fundraising commitment of $250 (You will receive an event cycling jersey) * 2. Ride only. Registration fee is $60 before 3/31, $80 from 4/1-4/27 and $100 the day of (you will receive a t-shirt) * 3. Volunteer - Team CDKL5 will be manning an aid station during the ride - volunteering is free! (and you get a t-shirt) * 4. Recruit others to ride/fundraise (I know the Gator reach is far - spread the word!!) * 5. Donate to support Team CDKL5 here: http://givingpages.upenn.edu/CDKL5Avery (you get my undying gratitude) [https://socialfundraising.apps.upenn.edu/socialFundraising/jsp/fast.do?webService=image&id=105093786&r=STITQ4BL]<http://givingpages.upenn.edu/CDKL5Avery> CDKL5 Ride for a Cure<http://givingpages.upenn.edu/CDKL5Avery> givingpages.upenn.edu Help us raise some much needed funds for CDKL5!! The bike ride has 3 different distance options: 12 miles flat out and back route (for the recreational rider) 2. 33 mile route (perfect for those training for sprint to half distances) 3. 73 mile route (Ironmen - I'm looking at you) This would be a great opportunity to get in a group training ride as well as support a great cause. If you would like to register, you can do so here: http://www.milliondollarbikeride.org/cyclist-registration/ * Be sure to choose CDKL5 as your team when signing up * Once signed up - let me know and I'll add you to our Facebook page, where you can find information helpful to setting up your giving page and connect with others who are riding If you would like to learn more about CDKL5, you can do so here: www.cdkl5.com<http://www.cdkl5.com/> If you have any questions at all, feel free to email me at Kristin.kozera@gmail.com Already in 2016, we've lost two children to this terrible disease - Harper, who was 5 and Sorrel who was only 15 months old. Please help us find a cure. All the best, Kristin Kozera