Search results for ‘Gina’
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Megan Nuffer and her sister’s story, Katie…
Gina, My name is Megan Nuffer, I am the one that sat behind you at the concert, Melissa and I. I am so happy you gave me your...
Run Families
Pamela Porter Hi Gina. Amazed with your strength and determination. Just wanted to help. I live in Chile. I have twin preemies with no severe issues but...
Resources
123Genetix 123Genetix is an innovative social enterprise created to empower rare disease research. At 123Genetix we believe that rare should not mean forgotten. To empower rare disease research...
Advisory Board
The RUN Advisory Board Mission & Vision Raise awareness for families with children afflicted with undiagnosed or rare diagnosed conditions. Urge insurance companies to reimburse genome sequencing in...
Ava and Addi Story
June 29, 2014 In the spring of 2013, Ava’s journey lead her to the Mayo Clinic. Ava had been to the Mayo Clinic previously. However, this was Oskar’s...
Lucy Szajnuk
This is a section of Lucy’s story from The Szajnuk’s Journey I feel like I missed an entire year of Lucy’s milestones. Lucy started showing similar symptoms in...
Update on The Szajnuk Family (aka The Zanik Family)
April 27, 2014 Dear Family and Friends, I wanted to update you again on our family. I have had so many wonderful people reaching out to us recently...
Oskar Szajnuk
2013: Oskar Szajnuk was diagnosed at the age of four with an unknown genetic dysfunction, an autonomic neuropathy, small fiber polyneuropathy. He is extremely low in ferritins, which...
Testimonial from Tonya Condas
About 30 years ago my mother was diagnosed with progressive type Multiple Sclerosis. She was a stay at home mom and raised me and my brother with no...
Testimonial from Chris Hart
In a friendship that has spanned thirty years, though the ups and downs of life, you might wonder where will this begin? It is without question in my...