Kathleen Twible via Crowdrise
July 11, 2012
BENEFITING: EB Research Partnership
ORGANIZER: EB Research Partnership
Dear Family and Friends,
On November 4, 2012, we will be running the NYC Marathon in honor of our son and friend Robert John Twible. We will be part of the Jackson Gabriel Silver Foundation team and raise funds for a cure. Jamie and Alex Silver have been funding research throughout the country and the world as well. So much progress is being made. We have more hope now than ever before. We are so excited to be apart of such an amazing team!!
We are looking forward to being part of the 1% of people who can say that they have run a marathon. As we prepare for the BIG DAY, we think of the marathon that Robbie has been running for the past 10 years.(Robbie turned 10 May 16th) For 10 years he has been bandaged daily and has suffered the pain of blistering on every part of his body. He has been through numerous surgeries to help him eat and be able to swallow. He has had to sit in darkness for days due to blistering in his eyes. Daily he goes through painful bandage changes and baths to help fight infection. With all that he goes through, Robert continues to move forward and fight back against this horrible disease. He goes to school each day with a smile and loves being with his friends. He performs for his family and loves to sing and dance. Jersey Boys is his favorite- he wears a suit jacket and just bought a microphone stand from amazon- with all the pain he has such joy in his heart!!! He makes so many people laugh and inspires us all.
Please join us in putting and END to this terrible disease. Your donation will go toward research and finding a cure for EB. We want Robbie''s Broadway Debut to be PAIN FREE!! Without EB. We thank you for your love and support and of course, your generosity. 26.2 HERE WE COME!! God Bless!!!
Kathy and Brian xoxoxo
The NYC Marathon has been on my bucket list for years. I needed something to help me make the necessary commitment. I found that in my friend Robbie Twible! He provides all the inspiration I need. If you know Robbie, then you know exactly what I mean. If you have not had the privilege of meeting Robbie, come to one of our fundraisers, meet Robbie, and join us in a celebration of life! In the meantime, please donate and help us find a cure for EB!