There is an undiscussed epidemic happening in our country, and around the world: rare disease. Rare diseases are incredibly hard to advocate for, despite the fact that they affect so many people. Precisely because they are rare, it’s hard for companies to make money off them, doctors to educate themselves about them, and patients to advocate for them. [Read More]
U.R. Our Hope in the News!
Austin girls with rare disease now will get treated at Dell Children’s – Austin American Statesman – Austin, TX – November 12, 2016 – Click for Full Story
“I’m getting big,” 6-year-old Belle says as her parents, Pam and Chris Andrews, talk about her moving up to a different classroom in the fall. “I’m going to a new class.”
In the family’s Southwest Austin home in late May, Belle’s 2-year-old sister, Abby, is busy doing what 2-year-olds do: putting crayons and markers to her mouth as the family draws pictures of bluebonnets at Belle’s request.
They call them Belle bonnets because Belle was born in spring just as the bluebonnets were coming up.
In March, she had a birthday any 6-year-old would want, full of Disney princesses. Under the celebration, though, it was a time of heartbreak and uncertainty for the family. Just eight days before, Belle was diagnosed with Niemann-Pick Type C1, a rare genetic disorder sometimes called childhood Alzheimer’s. Nineteen days after the diagnosis, Abby also was diagnosed. Their parents did not know they both carried an autosomal recessive gene that both girls inherited. (Read More)
Hope Grows in Tarrytown – Tarrytown Newsletter, Austin, TX – February 2014
U.R. Our Hope was featured in the Tarrytown neighborhood newsletter after our visit to the local Fire Department.
The firefighters taught families valuable information about what to do in an emergency and tips to help them identify children and those with special medical concerns. View the publication here.
Leander mom wants to try cannabis oil to ease daughter’s seizures – Jenni Lee, KVUE, Austin, TX – October 29, 2016 – Click for Story
Undiagnosed diseases featured in documentary – Jade Mingus, KVUE, Austin, TX – June 8, 2014- Click for Story
“I don’t think the non-medical community really has a grasp of what undiagnosed looks like and what it’s like to not get services because we don’t know what’s wrong with you,” said U.R. Our Hope medical liaison, Mary Elizabeth Parker. Read More
Parents triumph in toddler’s diagnosis – Brian Sanders, KXAN, Austin, TX – June 19, 2013
Vanessa Garcia, Joseph Vaughan and their son Braxton were on KXAN News at Noon in February and demonstrated how they feed Braxton through a tube — not knowing then what was wrong with him. However, a new diagnosis has given them some direction and hope in caring for Braxton. Sister Aileen and Pediatric Dr. Parker, who has been working with the family, also joined.
* Note the reporter incorrectly identifies Mary Elizabeth Parker as a pediatrician. She is a pediatric Physical Therapist and Medical Liaison for U.R. Our Hope
Diagnosis is a Cause Everyone Can Get Behind (via Siren Song)
One of the most moving moments (and there were many of them) at Global Genes’ recent patient advocacy summit was when Heather Long, founder of the Texas-based nonprofit U. R. Our Hope, rose to tell the audience why she felt that diagnosis was such a critical issue for the rare disease community. Long and her husband, Cody, have three children; two daughters and a son who passed away in 2006 at the age of 5. They know that they have lost their son. What they don’t know is why. Doctors told the Longs that Cal probably had a very rare metabolic disease, but they were unable to diagnose it. [Read More…]
Creating Hope for Undiagnosed Patients – SirenSong December 3, 2013 – Click for Story
Most rare disease patients spend a good portion of their lives coping with a condition that is either undiagnosed or misdiagnosed. Some of them die of a disease that has yet to be named. Heather Long’s son, Cal, was one of them. After years of searching for answers, she lost her son at the age of 5 to a disease that had never been diagnosed. Since then, she has made it her life’s work to help others caught in this heartbreaking situation.
In 2008, Heather Long founded an organization called U. R. Our Hope, with Mary Elizabeth Parker, PT, PhD, PCS, NCS, a healthcare professional and professor at Texas State University. It is 1 of the few organizations that support undiagnosed patients. In Need of Diagnosis and Syndromes Without a Name also help undiagnosed patients, but U.R. Our Hope is the only 1 that supports both children and adults. [Read More]
In past shows, I have had guests who related their heartbreak and struggle to find a diagnosis for a child or loved one. The journey is perilous, arduous and all consuming. For some, it can take years while others watch their loved one decline with no treatment or cure insight.
This show will feature families who searched and fought the healthcare system and were able to get answers. Then comes the work of treatment and long term care.
I am looking forward to the insight of these families and how they were able to successfully navigate the healthcare. There stories will inspire all of us.