Noah- my beautiful 15 month old daughter suffers from the extremely rare Congenital Generalized Lipodystrophy (Agpat2). It was such an honor meeting you today at the Oklahoma State Capitol..your kindness and love that you showed to both me and my daughter, Alani will never be forgotten. May God Bless you forever and always with the desires of your heart..#teamlipodystrophy
Noah - thanks for your work. My son has a rare disease, Rubinstein-Taybi Syndrome, and I did a 24-hour run to raise funds for an RTS-specific charity. Your goal of crossing the country is so much more amazing. It's my understanding that you're in Oklahoma City now (May 12). If so, please have your people get in touch with me - we'd love to cheer for you!
Hi Noah, God bless you for what you are doing ! If I had known that you were in Ft. Smith, AR yesterday I would have come to meet you. My daughter, Autumn, battled Mucolipidosis III for 38 years. It is so very rare that she was the only known patient in AR. On Nov. 21, 2014, 3 days after her 38th birthday, she went home to heaven. She spent so many years in horrible horrible pain and many many surgeries to replace joints, fuse joints and replace bones with cadaver bone. So little attention is on rare disease. God speed !
Hey, Noah! It was a pleasure meeting you today in Roland, Oklahoma. Thanks for everything you do. Your public voice is a gift from God.
You are AWESOME Noah!! We met early in your journey but we continue to watch you travel daily. THANK YOU! We dedicate today to Garrett (the Grand). Today Garrett turned 5. He is a wonderful boy with NCL - infantile (Batten Disease). He meets challenges daily and overcomes them with strength just like Noah. So glad there are people and a runner out there giving Rare Disease a voice.