LEUKODYSTROPHY SPECIALISTS

 

Dr. Genevieve Bernard – Montreal, Canada. 

Dr. Bernard is the foremost expert on POLR3-related leukodystrophies (4H), along with Dr. Adeline Vanderver and Dr. Nicole Wolf. Dr. Bernard is a Pediatric Neurologist at Montreal Children’s Hospital; McGill University. She sees patients and their families daily in the hospital and her office, and she works with her team, tirelessly in their MyelinNeuro Gene Lab to find a cure for 4H. She’s also on the Medical Board of Directors of the United Leukodystrophy Foundation. Her dedication to finding a cure is a treasure for all of us, as her patients. She’s not only an amazing doctor, she’s an even more amazing person. We are ever so grateful to have Dr. Bernard in our lives. 

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The Yaya Foundation for 4H Leukodystrophy

We met our friends, Ron and June Garber (parents of Yaya Garber) at the 2017 ULF annual conference. The Yaya Foundation was founded by Ron and June and other parents of children with 4H Leukodystrophy because they shared similar struggles, resources, and strived for better care for our children. We were all dismayed that there was no organized effort to advance research and unlock a cure for 4H. Currently, The Yaya Foundation for 4H Leukodystrophy is the only organization in the world fighting specifically for children with 4H. They’re building an ecosystem of patients, families, researchers, clinicians, scientific experts, and supporters in order to:

·      Accelerate and support research,

·      Provide educational and emotional support, and;

·      Raise awareness

 

To learn more or to donate, go to yayafoundation4hl.org

 

The United Leukodystrophy Foundation (ULF)

The ULF was one of the first organizations our parents contacted when Addy was diagnosed with 4H Leukodystrophy. They’ve been a friend, support, and a fabulous network for us. By attending the ULF annual conferences, we’ve been able to connect with the world’s experts that devote their lives to finding cures for leukodystrophies. We’ve also met so many wonderful families that are living through what we are, and they’ve become like family. We are so impressed and grateful for the ULF’s involvement and support, that my mom is now a proud new member of the ULF Board of Directors, a most humbling and exciting opportunity.

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POLR3 Caretakers – Private Facebook Group:

The POLR3 Caretakers, is a social media group that we’ve come to know and humbly call our friends. We are thankful to have the capability to share experiences, symptoms, knowledge, and so much more through social exchange. We all have children or loved ones with POLR3-related leukodystrophy (4H). Some more advanced than others, some newly diagnosed, but we’re all in the same place--fighting for our children’s quality of life and finding a cure. This group has members from around the world, so it’s helpful to learn what may be happening in other countries vs. the U.S., or share our experiences openly, without judgment or fear of saying the wrong thing. All of our lives are complicated and scary, so it’s nice to be able to just ask the group questions. For instance, maybe something is a simple cold, but our first reaction is usually, “is this a symptom of the leukodystrophy?” So to be able to post questions and get answers is comforting.   

 

 

 

ADDY'S CHILDREN'S HOSPITAL COLORADO TEAM
(Denver & Grand Junction)

 

Dr. Padmini Palat – Pediatric Neurologist 

Dr. Joyce Oleszek – Pediatric Physical Medicine & Rehabilitation 

Dr. Benjamin Hughes – Pulmonologist

Dr. Philip Scott Zeitler – Endocrinologist    

 

Additional Specialties: 

Audiology, Speech & Communication, Feeding & Swallowing, 

Genetics & Metabolic, Bone & Mineral Specialists

 

 

ADDY'S OUTSIDE SPECIALIST TEAM

 

Bridging Bionics Foundation

Amanda Boxtel – Bridging Bionics Foundation

Maria Grufstedt – BBF Physical Therapist, Snowmass Club

We met Amanda Boxtel at a fundraiser for Bridging Bionics in Snowmass. She was giving a demonstration of the Exoskeleton, and noticed Addy in her walker, so we chatted about Addy’s condition and she invited us to visit and meet the Bridging Bionics therapy team at the Snowmass Club. The truly amazing work that team does for so many people in the valley, and for Addy is invaluable. The stimulator helps Addy to strengthen the areas of her body that need it most, and the Upsee helps with her coordination and mobility. Without Amanda and her team, Addy may not have come as far as she has over the past couple of years. We thank them from the bottom of our hearts. To learn more or to donate, go to bridgingbionics.org

 

Children’s Eye Physicians, Grand Junction

Pediatric Physical Therapist, Carbondale

Western Slope Orthotics, Grand Junction 

Wheelchair & Mobility Equipment, Grand Junction

 

 

JEN & ADDY'S CHIROPRACTIC & NATUROPATH TEAM

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LUX Wellness Center, Carbondale 

 

Dr. Lauren Whittaker: Dr. Lauren is instrumental in boosting Addy’s immune system and aligning her body in the necessary locations through natural techniques. 

 

Dr. Jade Wimberley: Along with Dr. Lauren’s care for Addy, Dr. Jade continues to amaze with her breathe of knowledge and care for me. She’s played an integral part in my good health and well-being.

 

JEN'S SELF-CARE

 

Rising Crane Training Center

 

Illuminating Wellness

 

Colorado Community Acupuncture

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Pathfinders

Allison Daily, Director of Pathfinders in Aspen

Pathfinders is a Colorado non-profit psychosocial support program for chronically ill patients, those suffering from grief and loss, caregivers, family members and the community. They provide a safe place to feel and move towards healing. They provide so many services to the family’s including counseling, support, meals, rides, and so many other services Their volunteers helped our family get through that first year, after learning Addy’s diagnosis. We were basically still in a fog, and just not able to cope with much more than taking care of our day to day. I don’t know how we could have done it without the help of the Pathfinders--people we had never met, who reached out to us with unconditional love and support when they learned about Addy. We were truly blessed to have them come into our lives and thank them more than words can express. To learn more or get involved, go to pathfindersforyou.org