UMDF Family Meeting with Dr. Cohen

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.…

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Survey on Parental Uncertainty

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…

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Fundraiser: Chick-Fil-A Spirit Night

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…

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A Child’s Rare and Undiagnosed Illness: A Mother’s Journey

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…

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UMDF Energy for Life Walkathon

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…

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Undiagnosed: Medical Refugees

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…

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2013 Family Meetings: Feb – May

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…

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