Tributes

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.

 

natalia

 

 

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.

 

A Special Thanks

 

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!