Natalia Ichaso Jimenez
We owe a debt of gratitude to Natalia Ichaso Jimenez, President of the Manuela Martinez Foundation
and Dra. Martinez’s close friend and assistant, who worked diligently with outstanding dedication and
commitment to our families following the death of Dra. Martinez to provide an uninterrupted source of
the DHA-EE for our children as long as possible. By her efforts each of our families recovered medical
records and solved many of the overwhelming issues which faced us. Natalia, we can never, never forget
you and what you have done for our children.
Bizen Chemicals and Select Supplements
The families thank Bizen Chemicals of Japan and Select Supplements of California, who
make possible continued research and continuance of DHA-EE supply to our Zellweger
children after Dra. Martinez passed away. Each family has shared with them the difference
DHA-EE made in their child’s life.
CBADD and CCHMC
Appreciation must be also expressed to the Counsel for Bile Acid Diseases (CBADD), specifically
Arnie Tunis for his relentless encouragement and commanding involvement to reach out to the
parents of children with bile acid deficiency diseases. Likewise, recognition must be given to
Dr. Kenneth Setchell and Dr. James Heubi of the Cincinnati Children’s Hospital Medical Center
for their life-long sacrifices and contagious joy that have inspired us to catch the vision so that the
next generation might carry a lighter burden. We would not be where we are without you!
An acknowledgement of Mr. Gary Pyner, Chief Commercial Officer of Asklepion Pharmaceuticals,
must be voiced for his motivating inspiration and invincible drive to make our children’s lives be
of value. His example is something we desire to emulate.
Website
Thank you to Joseph S. Wulf who initially designed and created Zellweger’s…
Writing a Different Story, to Doug Blumenthal of Veragy Solutions, and others
who kindly donated their time and efforts.
FDA
We were moved with deep gratitude for the opportunity the FDA, Division of Gastroenterology &
Inborn Error Products, extended to us to hear our children’s stories September 29, 2014, and for
their interest in treatment for the next generation. A special thanks also to Dr. Philip Rosenthal,
Professor of Pediatrics and Surgery, Director, Pediatric Hepatolotgy, University of California, San
Francisco, and James Valentien, J.D., M.H.S., Associate, Hyman, Phelps & McNamara, P.C., for
their invaluable presence and contributions. Thank you again, Mr. Arnie Tunis for your dedication!
Brain Restoration Clinic
Once in a life time there comes across our path someone who changes the course of the future and
embraces parents with energetic support and encouragement. Jean-Ronel Corbier, MD, Pediatric
Neurologist, has recognized the importance and value of Dra. Martinez’ work with Zellweger Syndrome
Disorder and has committed to carrying it forward. There is not a more dedicated doctor to genuinely
thank for his extraordinary kindness and courage. Like Dra. Martinez’ personal sacrifice and devotion
to our children, Dr. Corbier stands out today as a giant man serving children with neurological disorders.
Piedmont Research Partners and Integra Research Center
Thank you Brenda Sprinkle PA-C, CCRC, Angie Bowers, Susan Blumenthal, Ph.D., Amit Shah, MD, PI,
and our team of monitors and staff for your belief and passion in bringing our research dreams to fruition!
You made the impossible happen!
To our friends at Retrophin
You in so many ways have inspired us and given us cause to keep investigating a better tomorrow
for our Zellweger children. You listen, educate, connect, and involve. Thank you for valuing our
pursuits and our children!
