Hope For Hypothamalic
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The Hope for HH Board aims to support the best research in HH. Please see a message below about a time limited opportunity from Barrows Neurological Institute to support HH research. And if you have not yet participated in the Rare Epilepsy Network - please add it to your "before summer end" bucket list!

Stay tuned for updated information, photos and speaker videos from the Houston Family Conference coming this fall!

Warmly,
Lisa, Erica, Wendi, Julie, Emma & Ilene
HH Board & Caregivers

Please support HH research!

The Barrow Hypothalamic Hamartoma Center is conducting a research project involving those treated at Barrow Neurological Institute prior to June 30, 2010. In order to identify patterns and trends in long-term outcomes, this study will focus on those patients with at least a 5 year follow-up.

The purpose of this study is to examine the outcomes of patients with HH who were treated through surgical intervention and/or Gamma Knife radiosurgery. Patient survival, post-treatment complications, improvement in pre-operative symptoms and selected variables that predict outcome will be assessed.

We are fortunate to have Rachel Ives, a medical student from Mid-Western University, available for a limited time, to help us collect follow-up data for this study. Rachel is just beginning her journey into the medical field and is not considered an "HH expert" at this time so she may ask you questions about your case if anything is unclear to her.

Rachel will contact patients and families to learn about their experience throughout the recovery process. Please help Rachel and the other team members gather this much needed information.  Be as detailed and honest about all aspects of the recovery process as we need to learn about the positive and negative aspects of long-term outcomes in order to improve care in the future.

If you or your family member fits these criteria and do not hear from us in the near future please feel free to contact Maggie - contact information below -  directly. Let's work together to raise awareness about HH and improve the quality of life for HH patients and their loved ones.

Warm regards,
Maggie  Bobrowitz, RN, MBA
Neuroscience Program Coordinator
Barrow Neurological Institute
Office:   (602) 406-7585
SPRING TO ACTION - SIGN UP FOR THE RARE EPILEPSY NETWORK

Which HH treatment is right for you?
What are the best supports for school age kids with HH?
How many HH patients have autism, ADHD, or other issues?

Only if ALL HH patients come together and share information will we learn the answers to these important questions. Read why one HH board member is so passionate about the REN hereComplete it before the summer's end a here. Need help, contact:   Ilene Miller