Family Registration

Potentials Foundation
PO Box 34, Sandoval IL 62882
[email protected]
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Board of Directors

Christy Jordan RN BSN CCRN, President, MOPD II Mother, Illinois 

• Christy Jordan is the mother of two MOPDII children, Bridgette (26) and Bradley (24) and one average-height daughter, Brandi (28).  The Jordan family lives in Southern Illinois.  Christy is a registered nurse who specializes in Intensive Care Medicine.  She volunteers her time with Potentials Foundation, making her expertise available to others.  She offers her knowledge to other MOPDII families via phone calls, emails, and visits.  She is a sympathetic ear, a resource for questions, and a friendly voice of wisdom.   Her understanding of medical information and procedures helps bring medical terminology down to a level that all parents can understand.  She is discriminating and professional; respecting family privacy and parental choices when information is shared with her.  She has navigated many of the challenges MOPDII families face.  Bri’s experiences include a tracheostomy since early infancy, feeding difficulties, orthopedic challenges, and many other health impairments.  Brad has farsightedness corrected by glasses and dentures (leading up to dental implants).  He had been without major health concerns and experienced no hospitalizations, until this summer.   Christy had felt safe that both kids may have escaped the vascular abnormalities.  But in June of 2008, Brad experienced a ruptured cerebral aneurysm with moya moya disease.  Brad underwent three successful brain surgeries to correct the condition.  Brad recently started dialysis and is on the kidney transplant list. Christy has been a strong advocate for her children throughout their medical and educational life experiences.   She is here to help and share the wisdom she has learned from her family’s journey. 

Jim Linn, MRI Education Specialist, Treasurer, Primordial - unknown, Florida

• Jim has been in the Radiology Field for 30 years with the last 16 years working for Siemens Medical as an MRI Education Specialist. He holds a Bachelors degree in Biological Science from the University of South Florida. Jim is married to Sherry Linn. His daughter Allie, age 20, is a primordial dwarf but with no exact type as of yet. Allie has graduated from High School and has a goal of possibly doing Speech Therapy as a profession. Jim and his family's favorite thing to do is to Travel.​

Natalie Horst, Vice President, MOPD II Mother, Pennsylvania

• Natalie holds a Bachelors of Art in Psychology and is the mother of four children, three of which have MOPD II.  Natalie has spent the last 8 1/2 years caring for her children, taking them to medical and therapy appointments. She is also gathering as much knowledge as possible about MOPD II in order to ensure her boys and daughter have the best future possible and to empower her to help other families affected by Primordial Dwarfism.  Natalie is the creator of Big Steps for Little People 5K.

Juli Romero, Secretary, MOPD Unspecified/IGF1-R Mother Texas

• Juli Romero is a mother of 4 busy children. My oldest, Jenna, is average height will be a graduate in the class of 2020. Three days before her 5th birthday, our identical twin boys, Joseph and Isaac arrived 5 weeks early. In 2011, I left my Managed Care Billing job after 7 years, and walked my boys through their developmental challenges. They are now in 6th grade and average height. In October of 2013, I delivered the tiniest baby I have ever seen. Emma was born at 38 weeks with IUGR unknown cause. At the age of 2 we learned she has a very rare disease causing mutation on her IGF1-R gene leading to her diagnosis of Primordial Dwarfism. To date, no one has her same exact mutation. Emma is now in Pre-K 4 getting Kinder ready. Aside from frequent doctors appointments, many annual school ARD meetings, being a full-time mom, I also enjoy my part-time position as a Cafeteria Monitor at Emma's school. 

Douglas White, Website Administrator, MOPD II Father, Illinois

• Doug is the father of Daniel White, a primordial dwarf with MOPD II who was born in 1988 in Connecticut. Doug spent his adult life working in Corporate Communications and Software Development. His work experience during that career spans the gamut from small companies where he was a Managing Partner to being an employee in a Fortune 50 Corporation. He currently lives in Buffalo Grove, IL with his wife Monica and the aforementioned son Daniel.

Advisory Board

Dr. Michael B. Bober, M.D., Ph.D., Co-Director, Skeletal Dysplasia Program, Nemours Children's Clinic, Wilmington, Delaware

Angie Duker, MS,Certified Genetic Counselor, Nemours Children’s Clinic, Wilmington, Delaware

Gary K. Steinberg, M.D., Ph.D., Chairman, Department of Neurosurgery, Lacroute-Hearst Professor Neurosurgery, Co-Director, Stanford Stroke Center, Stanford, California
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Stephen J. Riedy, D.D.S., M.S., Fixed and Removable Prosthodontics, Maxillofacial Prosthetics and Implants, Plymouth, Michigan (734) 453-6840

Christina Flora, MS, Certified Genetics Counselor, St. Joseph's Children’s Hospital, Paterson, NJ (973) 754-3222