Fueled by Formula, Fruit, Veggies and Heart
Happy Easter everyone!!! Well, the marathon is just 1 day away. I had a wonderful, inspiring evening last night at the Running for Rare Diseases Team dinner at Genzyme. I was delighted to spend time with two HCU families, the Nelson’s (Maeve’s family) and the Hummel’s (Will’s family) as well as some amazing members of…
6 days and counting until the 2014 Boston Marathon!!! I’m so excited to be running in honor of these 26 amazing HCU Heroes! If you’d like to make a donation to NORD’s HCU restricted research fund in honor of these amazing HCU Heroes, please stop by my fundraising page for the 2014 Boston Marathon: http://www.firstgiving.com/fundraiser/kristinrapp/bostonmarathon2014
The following blog post was written by Joy Brown about her daughter, Ariella, who was diagnosed with HCU at the age of 12. Joy reached out to me this week to share Ari’s story. I was so touched to read Joy’s words about the challenges Ari has faced, and I am SO very honored to dedicate one of my 2014 Boston…
I’m hosting a FUNdraiser at Flanagan’s Harp and Fiddle tomorrow night (April 11th) from 7PM to close!!! Come out at celebrate with friends and family to help raise money for the National Organization of Rare Disoders (NORD). Enjoy live music by The DCeivers, a raffle, some good eats, and plenty to drink – all while raising…
Hello there! I just wanted to give you all a quick update on my training… It’s a tradition for all the charity teams to do a long run together on the Boston Marathon course a few weeks before race day – a 21 miler from Hopkinton (the starting line of the Boston Marathon) to the…
Meet my newest HCU Heroes – Xander and Max from Barnsley, South Yorkshire, UK! Sophia Tattersall reached out to me this week & shared her sons’ story which is a testament to the importance of mandatory newborn screening for Homocystinuria. I’m thrilled to dedicate part of my 2014 Boston Marathon to this dynamic duo! In…
The following blog post was written by Tammy MacNicol about her son, Jacob. Jacob was the first child diagnosed with HCU in Queensland, Australia following the start of newborn screening there. Tammy is very active in the HCU community, and is the creator of the Facebook Support group: Homocystinuria Support is available!!! I know many…
The story I’m sharing today is one that I’ll be thinking of when I tackle the toughest part of the Boston Marathon course – Heartbreak Hill and the “Haunted Mile“. Most people have heard about the infamous Hearbreak Hill, but it’s actually not as steep a hill as you might imagine. What makes it so…
The following blog post was written by Kath Fricke about her son Blake. Blake was the first child diagnosed with HCU in Victoria, Australia following the start of newborn screening there. Kath is very active in the HCU community & is a moderator on the Facebook support group: Homocystinuria Support if available!!! I am…