n conjunction with the Annual Texas Parent to Parent Conference in San Marcos this July, we are excited to have Dr. Cohen coming in to speak with families! Dr. Bruce Cohen will be presenting on Mitochondrial Disease and there will also be time for a Q&A Session where parents will be able to ask Dr.…
We have recently been contacted by Ellen Mcnamara, a Genetic Counseling Student at the Johns Hopkins and National Human Genome Research Institute Genetic Counseling Program. This student is conducting a survey to research her thesis about the uncertainty parents face when raising a child with an undiagnosed medical condition. For this survey, parents who have…
Please join us for our first Spirit Night with Chick-Fil-A THIS Thursday, June 20th from 5 pm to 8 pm! On Thursday, Chick-Fil-A will donate 10% of all sales to U.R. Our Hope for everyone who mentions our organization when they place their order. Both Dine-in and Drive-thru receipts count toward this event, so stop…
Today, at 5:00pm, Our co-founder and Director of Advocacy, Heather Long, will be interviewed by Hari Khalsa, The Healthcare Whisperer, live on her radio blog show. Heather will be discussing her journey with her son Cal who passed away in 2006 at five years old to an undiagnosed disease. Since her son’s death, Heather has…
We are excited to join our friends at the United Mitochondrial Disease Foundation of Central Texas in their annual Energy for Life Walkathon! The goal of the UMDF walkathon is to raise awareness as well as support those who are fighting mitochondrial disease in our area. Whether you, someone you love, or someone you know is…
Please join us in support of this mission to develop a database for undiagnosed diseases! Many of our own children and families have been searching for a diagnosis for several years to no avail. Giving physicians the ability to search a national registry to help diagnose their patients would be tremendously helpful to all of…
The final trailer for “Undiagnosed: Medical Refugees” is here! Several of our U.R. Our Hope families are featured and will share their stories of being undiagnosed and why a diagnosis is so important. The film is in it’s final stages, but financial support is needed to make this project a reality. Please share this project…
2013 Monthly Meetings February – May: Thank you to all our families for your input! Please remember that venues/dates & times may change. Please confirm via our Facebook page or email Mary Elizabeth directly: mparkerpt@aol.com. February 2013: Thursday, February 7th at 6 p.m. at Snow Pea. Meet Hari Khalsa, Healthcare Whisperer and supporter of U.R. Our Hope. Please RSVP…
Our hearts are heavy during a normally joyful time of year. Many of our families are in the hospital, the tragic loss of life in Newtown, CT… But, we are looking forward to a new year filled with HOPE! We have 2 events in January: 1. Our monthly meeting on Saturday, January 12th at 11:30a.m.…
Mary Elizabeth is currently attending the annual UMDF conference in Maryland, making some great contacts. Here she is at the National Institutes of Health meeting with Dr. Gahl and Lynne Wolfe. Awesome!