The physicians, dentists, genetic counselors and researchers who comprise our Scientific Advisory Council (SAC) bring incredible expertise to our mission at the National Foundation for Ectodermal Dysplasias (NFED). We rely on their talents to lead our research program, present educational workshops at Family Conferences, write educational materials and talk with families one-on-one.

Six SAC members have been with us for more than 10 years and five have dedicated 20+ years to our NFED family. They are not paid. Most give up at least three days of work each year to participate in NFED events. We simply could not put a price tag on the value they bring to our organization.

Several SAC members are nearing retirement! We thought it was wise to recruit new members in their specialty so that SAC members could mentor them for several years. This ensures that knowledge will be shared and a continuity of expertise.

We are honored to welcome three care providers to our SAC.

Dr. Blieden

Lauren Blieden, M.D.

Dr. Blieden is a board-certified ophthalmologist specializing in the medical and surgical management of adult and pediatric glaucoma. Dr. Blieden received her medical degree from Baylor College of Medicine, completed her internship at the Methodist Hospital in Houston and ophthalmology residency at Baylor College of Medicine.

She then completed her glaucoma fellowship at the Bascom Palmer Eye Institute in Miami, Florida. She recently joined the Cullen Eye Institute after four years as an Assistant Professor in Ophthalmology at the University of Texas Health Science Center, Houston where she was also the Medical Director of the Vale-Asche-Russell Clinical Research Unit.

She has published 20 papers and is actively participating in clinical research. She is also a member of the pediatric subcommittee for the American Glaucoma Society and takes an active role in the Childhood Glaucoma Research Network.

She is fluent in Spanish. Dr. Blieden lives in Houston, Texas with her husband, who is a Captain in the Houston Fire Department, 5 goldfish, 3 dogs and 2 children.

Dr. DeKlotz

Cynthia Marie Carver DeKlotz, M.D.

Dr. DeKlotz is board-certified in internal medicine, dermatology, and pediatric dermatology. She graduated Summa Cum Laude with a Bachelor of Science in Applied Mathematics from Auburn University. She received a Gates-Cambridge Scholarship to the University of Cambridge, Cambridge, England, where she graduated with honors in Parts III Mathematics and received a Master of Advanced Study, graduating Summa Cum Laude and Alpha Omega Alpha.

After completing residency at Georgetown University Hospital/Washington Hospital Center in DC, she completed a pediatric dermatology fellowship at the University of California San Diego’s Rady Children’s Hospital.  After working in Monroeville, Pa, she joined the faculty as an adult and pediatric dermatologist. She is an Assistant Professor of Clinical Medicine and Pediatrics at MedStar Washington Hospital Center/Georgetown University Hospital in Washington, D.C.

At Georgetown University School of Medicine, she is the Director of Orthopedic, Rheumatology, Dermatology Module and Co-Director of Immunology, Rheumatology, Dermatology Module.  She is actively involved in the Pediatric Dermatology Research Alliance (PeDRA).  Her clinical and research interests include genodermatosis, laser surgery, and general medical dermatology.

“The recent NFED family meeting was truly an inspiring experience for me and fueled my passion for genetic skin diseases. The collaborative environment amongst patients, families, researchers, and clinicians from numerous specialties at that family meeting increased my personal interest in ectodermal dysplasias and sparked a desire to become more actively involved in the NFED.  I consider it an honor and a privilege to join the NFED SAC, and I hope that through this collaborative organization, I can gain insight and make a substantial contribution to improving the lives of individuals with ectodermal dysplasias. – Dr. DeKlotz

Dr. DeKlotz is married to Tim DeKlotz and they have two children, Grace, age 3, and James age 1½.

Dr. Hopkins

Brandon Hopkins, M.D.

Dr. Hopkins is a pediatric otolaryngologist who joined the Cleveland Clinic’s Head and Neck Institute in 2013 after completing his fellowship at the University of California, Davis in pediatric otolaryngology cleft and craniofacial care.

Dr. Hopkins earned his medical degree from James H. Quillen College of Medicine. He completed his otolaryngology training at the University of Cincinnati and Cincinnati Children’s Hospital. He is board-certified by the State of Ohio Medical Board and the American Board of Otolaryngology.

In addition to the full scope of pediatric otolaryngology-head and neck surgery, he has a special interest in pediatric patients needing complex, coordinated medical care. He has expertise in the surgical care of patients with cleft and craniofacial abnormalities and the management of pediatric multi-level airway obstruction.

His interest in cleft craniofacial care also extends to his work with Faces of Tomorrow, a non-profit surgical mission organization.  Dr. Hopkins has participated in six surgical missions over the last several years and has overseas volunteer experience in the Philippines, Russia, and India.

Dr. Hopkins says he’s looking forward to helping families with ectodermal dysplasias with their ear, nose and throat issues.

“I am more than pleased to be participating in the care of children with ectodermal dysplasia through the NFED SAC. The children and families dealing with this process deserve world class research and world class care. The work done through NFED furthers this goal, and I am honored to part of that process.  I eagerly look forward to learning more about this community and how otolaryngology care can be optimized for these families. – Dr. Hopkins

We look forward to you meeting these three physicians at an upcoming Family Conference. They are eager to meet you as well, to hear your stories and learn more about ectodermal dysplasias.

4 comments on “Expanding Our Skin, ENT and Eye Expertise”

  1. 1
    Patti Levi on October 26, 2017

    Hi I am a mother of a 41 year old son with E.D. He was excepted to NIH at age 13 for Dental implants and dentures. He also saw Dermatologist, while he was there. Approximately 7 to 8 years ago he was diagnosed with stage 3 ulcerated melanoma, Went through surgery and many interferon treatments, and is checked on a regular basis. My question is, He does have very dry skin and on his face experiences a Thick build up of dead dry skin around his lip and nose area. His Doctor, whom I do like, seems to always prescribe a chemo cream for this area at least once at year. Except for the year He stayed on a regular treatment plan getting peels with an esthetician. Whom is educated in the medical field for skin treatment. (My Daughter) The Chemo cream is very invasive, painful and really creates Chemo brain. I think the thick build up is not cancer, maybe can become cancer? But in staying on track with peels would allow the skin to clear off the dead dryness? Really appreciate any advice. I can also send pictures. His name is Travis Levi there may still be records on him, they took many pictures. Thank you Patti Levi

    1. 2
      Kelley on October 26, 2017

      Hi, Patti. Would you mind sending to your message to me at Kelley@nfed.org. I need to research your question. Thank you.

    2. 3
      Mary Fete on October 27, 2017

      Hi Patti,
      Thank you for contacting the NFED. I am sorry that Travis is experiencing these challenges. Boy those are tough questions and unfortunately, I don’t have the answers for you. Why don’t you have your son discuss these concerns with his treating physician.
      I hope his skin heals and the issues are resolved soon.
      Keep in touch!

  2. 4
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