We love Hunter’s Hope Foundation for so many reasons, but the Leukodystrophy Care Network is at the top of the list.
We were fortunate that our local hospital (Penn State M.S. Hershey Medical Center) was willing to consult with Dr. Escolar and follow her recommendations, but many hospitals are unwilling – or unaware of the need to consult with her. This can result in inadequate care for Leukodystrophy children.
To learn more about the LCN, go here.
In the rare disease world you must be careful about choosing specialists. With Krabbe, there are few doctors who have had any experience with it, and only two I would consider to be experts: Dr. Maria Escolar at Children’s Hospital of Pittsburgh, and Dr. Joanne Kurtzberg at Duke University.
Dr. Escolar was such a wonderful and crucial part of our journey, offering her expertise with each visit, phone call, email, or text. She consulted with all of Tori’s local specialists to ensure that they knew how to care for her, and for that we are so grateful.
Hunter’s Hope Foundation and their Leukodystrophy Care Network are working to make more doctors aware and able to care for children with leukodystrophies, and they are also in the process of publishing clinical practice guidelines so that each child can receive the same recommendations and care no matter where they are seen. You can read more about their work here.
Today we heard updates from several hospitals that are working toward becoming Leukodystrophy Centers of Excellence in order to better care for these children and their complex needs, and we … Continue reading Hunter’s Hope Symposium 2017 – Day Two
Symposium time is here! It's the one time each year we are surrounded by people from all over the world who understand exactly what we have been through. It's the … Continue reading Hunter’s Hope Symposium 2017 – Day One
Today we heard reports on the Leukodystrophy Care Network that Hunter’s Hope is working hard to implement around the country. They are the voice of the family in ensuring excellent … Continue reading Hunter’s Hope Symposium: Thursday
Today was a “free day” for families to do as they pleased. Most spent time at the pool and relaxed around the resort. Brennan played golf with three of the … Continue reading Hunter’s Hope Symposium: Day Four
Today’s format was similar to yesterday: breakfast, seminars updating us on current research and legislation, and plenty of social time. One of the amazing things that was shared was this: … Continue reading Hunter’s Hope Symposium: Day Three
As we have enjoyed the past few days here in New York with our leukodystrophy family, what has struck me more than anything is the love that radiates from each … Continue reading Beauty in the Midst of Brokenness…
What a busy and fantastic day! Tori got to spend time with some of her buddies…this is Parker from Maryland. He is eight months old. We heard from several … Continue reading Hunter’s Hope Symposium: Day Two
We made it! Our day started early as we had to go pick up our rental vehicle. We decided early on that renting a bigger vehicle was essential if we … Continue reading Hunter’s Hope Symposium: Day One
Even So, Joy 