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XP Memorials

John J. DiGiovanna, M.D.
1950 to 2023

The CCR community is profoundly saddened by the passing of John J. DiGiovanna, M.D., Senior Research Physician in the Laboratory of Cancer Biology and Genetics. Dr. DiGiovanna was an eminent Board-certified dermatologist and former Professor of Dermatology at Brown University School of Medicine.

John was a dedicated researcher at the NCI for over 40 years. He played an active role in clinical and laboratory studies of patients with rare genetic disorders of DNA repair: xeroderma pigmentosum (XP) with a high frequency of skin cancer, and trichothiodystrophy (TTD) with multisystem developmental abnormalities, and also patients with disorders of keratin. He performed detailed studies of their phenotype, underlying molecular causes and clinical management.

John earned his B.S. magna cum laude at SUNY Stony Brook in Long Island, NY, and received his M.D. from SUNY Upstate Medical Center in Syracuse. He completed an internship in internal medicine at Long Island Jewish Hospital and a residency in dermatology at the University of Miami. John came to the Dermatology Branch NCI in 1980 to work with Dr. Gary Peck on the development of treatments for dermatologic disorders and skin cancer chemoprevention. He was involved in pioneering studies of use of oral retinoids (Accutane) for treatment of acne and for prevention of skin cancer.

John was a passionate researcher and clinician, taking on many concurrent roles throughout his career to pursue his variety of aspirations. In 1994, John became the Head of the Dermatology Clinical Research Unit in the National Institute of Arthritis and Musculoskeletal and Skin Diseases.

During this time, he also became a professor in the Department of Dermatology at Brown University and Director of the Division of Dermatopharmacology which evaluated new medications for use in patients with skin diseases. Additionally, he was a staff physician at the Rhode Island Hospital.

In 2000, John joined Dr. Kenneth Kraemer in the NCI, CCR Basic Research Laboratory as a Research Investigator, and from 2010 on, served as part of the DNA Repair Section in the Laboratory of Cancer Biology and Genetics. He provided exceptional Clinical Center consultation for patients in protocols in the Undiagnosed Diseases Program (UDP) and in many institutes. These patients have diverse diagnoses including autoinflammatory diseases, inherited cancer predisposition syndromes, and exotic infectious diseases. He helped to characterize UDP patients who have eluded diagnoses in tertiary centers throughout the US. He also served as a long-term consultant to the Food and Drug Administration (FDA) in the divisions overseeing Dermatologic drugs and the FDA Pharmacy Compounding Advisory Committee.

Dr. DiGiovanna had an exceptional ability to synthesize diverse clinical and laboratory information to further the understanding of these complicated patients and provide a true “bench to bedside” approach. While XP is defined by a high skin cancer risk, he characterized a new predisposition to hematologic malignancies, and to thyroid nodules and cancer. In addition to the known risk of skin aging and malignancy due to UV radiation in XP, a novel and unsuspected risk to female reproductive health, manifested by premature menopause was discovered, expanding the concept of XP as a disease of premature aging beyond skin. Dr. John DiGiovanna found a high frequency of bone abnormalities in the children with TTD. In particular, there was an early onset of avascular necrosis of the hips leading to inabilty to walk. He worked with specialists to develop a protocol to permit successful surgery with minimal complications.

Dr. John DiGiovanna has widely collaborated with others in his studies of disorders of keratinization and use of retinoids for therapy. He even traveled to Egypt in search of patients with unusual forms of these diseases. He published papers on use of systemic retinoids for therapy of ichthyoses. He has worked with an international group of experts to revise the nomenclature and classification of inherited ichthyoses.

Dr. DiGiovanna has been extremely productive. He is author of more than 175 papers, 33 book chapters, and 1 book edited. Throughout his career, John was a well-respected member of several prestigious dermatology societies, including the American Dermatological Association, the American Academy of Dermatology, and the Washington D.C. Dermatology Society. He was also on the editorial boards of the Journal of the American Academy of Dermatology and the Dermatology Review. In 1998 he received a Masters of Arts ad eundum from Brown University. Both in the US and worldwide he gave numerous invited lectures.

John was extensively involved in teaching and mentoring. He organized widely attended Dermatology Grand Rounds during the weeks he provided Clinical Center consultations. He played a central role in mentoring post-bac and Medical Research Scholar fellows early in their careers as well as more senior researchers who are now Dermatology professors.
Many people remarked on his “kind, careful and helping attitude.” “His supportive nature was dedicated to helping people improve their lives.” “He was a great motivator”.

John was an outstanding clinician who always sought precise details. In addition, researchers add that “When attending basic science seminars, he frequently provided clinical insights that enriched the relevance of whatever was being presented.”
John was diagnosed with metastatic pancreatic cancer more than 2 years ago. He was determined to live his life to the fullest despite his cancer diagnosis. He never lost his sense of humor and bravely continued the research, mentoring and teaching that he loved.

In memory of John and in lieu of food or flowers, the family asks that contributions be made to the organizations that he most cared about. They are The Foundation for Ichthyosis and Related Skin Types ( and the Gay Men’s Chorus of Washington ( Both organizations rely on donated funds to further their mission of meaningfully supporting their communities, and to bring a wider awareness of their causes.

A private funeral for the family will be held in New York. There will be a memorial service held for John at a date not yet determined. Condolence messages can be sent to his husband, Julian Trail, at

Kenneth H. Kraemer, M.D.
Chief, DNA Repair Section
Laboratory of Cancer Biology and Genetics
Center for Cancer Research
National Cancer Institute
Building 37 Room 4002 MSC 4258
Bethesda, MD 20892 -4258
Phone numbers 240-760-6139 FAX: 240-541-4476

Richard Paul Bricker
Jan 25, 1950 Aug 13, 2021

Richard Paul Bricker, age 71 of Eaton, OH passed away peacefully on Friday, August 13, 2021 at Kettering Medical Center with his loving wife by his side. He was born January 25, 1950 in Detroit, Michigan to the late Pauline Jean Gavin.

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Heaven Gained an Angel 
Cameron Maia Bricker 3/6/2000-7/27/2021
Cameron for 21 years you had to avoid the sun, but your light shined brightly and changed so many lives.
Your legacy is everlasting.
Philippians 1:3
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It is with heavy hearts that XP Family Support would like to notify our families that Nina Markham has lost her fight with XP.  Our thoughts and prayers are with her family and she will be missed.  Nina was a wonderful and beloved person whose family has known XP Family Support for many years.  Please turn your thoughts and prays to her family as they go through this tough time.  Another star has been added to the night sky.

Normagene ‘Gene’ Cook 
(April 9, 1929 – February 4, 2011)

Council Grove, KS –Normagene ‘Gene’ Cook, age 81, died Friday, February 4, 2011 at her home in Council Grove, Kansas. She was born April 9, 1929 in Coats, KS the daughter of Melvin Charles and Cora Gertrude (Luce) Cozens. On July 24, 1949 she married Harold D. Cook in Coats, KS, he preceded her in death on August 2, 2000.

Gene was a member of the First United Methodist Church in Pratt, the 50/50 Sunday School Class, Jr. Mother’s Club, ladies bowling organizations, Green Valley Ladies Golf and Saratoga Community Club.

She is survived by two daughters: Marsha Ioerger of Manhattan, KS and Melanie & husband Rob Madden of Council Grove, KS, two sisters: Mildred Eubank and Martha Norris both of Coats, KS and four grandchildren: Tracy and Carl Purser of Norman, OK, Kyle and Sarah Madden of El Dorado, KS, Katie and Thad Davidson of Emporia, KS and Abby Heraud of France and four great grandchildren, one of whom has XP. She was preceded in death by a daughter, Charlotte Cook.

Friends may sign the register book Thursday and Friday from 9 a.m. – 8 p.m. at Larrison Mortuary, 300 Country Club Road, Pratt. Memorial service will be Saturday, February 12, 2011 at 10:00 a.m. at Larrison Mortuary, Pratt with Chaplain Ron Moser presiding. Inurnment will be in Greenlawn Cemetery in Pratt, KS.

Memorials may be made to XP Family Support Group (Xeroderma Pigmentosum is a rare genetic disease where a person’s DNA lacks the ability to repair damage from ultraviolet light) in care of the mortuary. Friends may leave condolences for the family at

HARRIS, Anne S. (Speelman) Of Winchester, January 7, 2011, Age 84. Wife of the late George B. Harris, Jr. Devoted mother of Andrew J. Harris and his wife Laura of Washington, DC, Amy L. Harris of Wilton, CT, Susan E. Crain and her husband Bill of Manhattan Beach, CA, and William P. Harris and his wife Kathleen of Arlington. Cherished Grandmother of Amanda, Meghan, Conor, Joseph, George, Edward, William P. Jr., Edward (Mac) M., Anne E., and Emma Crain. Funeral from the Lane Funeral Home, 760 Main St. (Rte 38) WINCHESTER on Thursday, January 13, 2011 at 9 A.M., followed By A Mass of Christian Burial at St. Eulalia Church, 50 Ridge St. Winchester at 10 A.M. Relatives and friends are kindly invited to attend. Visiting hours will be held in the Funeral Home on Wednesday, January 12th from 4-8 P.M. Interment Wildwood Cemetery, Winchester. At the families request in Lieu of flowers Donation’s may be made in Anne’s memory to: XP Family support Group 8495 Folsom Blvd. Suite #1 Sacramento, CA 95826

Anne Harris was an active support of the XP Family Support Group. Her darling granddaughter Emma has XP.

The XP Family Support Group mourns the loss of Anton (Tony) Jakovac, beloved Uncle to an XP child and supporter of the XP Family Support Group.

The XP Family Support Group mourns the loss of Stanco Giurissevich.

SACRAMENTO, CALIFORNIA — Jerry Milota, 75, died Jan. 12, 2010. Jerry, a grandfather to an XP child, has been a great supporter of the XP Family Support Group. His great loves were his family, friends, and RV, and especially traveling with his wife, Sandy, and spending time with his family and friends.

Remington Lambert –  Remington was an amazing cousin to XP patient Graycen Beardslee.

SPRUCE PINE , ALABAMA — Kevin Charles Swinney, 35, died Tuesday, Jan. 12, 2010. Kevin, who was diagnosed at a very young age with XP, lived life fully.

EL SALVADOR — Lenis Alvarenga, 19, died in the early hours of Christmas morning, Dec. 25, 2010. Lenis had struggled valiantly against XP and the cancer she eventually succombed to, coming to the US seeking the best medical care. When the system here wouldn’t work for Lenis, the XP Family Support Group arranged for her return to El Salvador and sent a medical team to her home city to perform surgery.

Latoya Braxton passed away on October 15, 2009. Latoya always had a smile on her face. She had just celebrated her 24th birthday. Her mother Alisha and sister Tiffany survive her.

Jill Suzanne Smith, 44, passed away July 29, 2009, at home in West Virginia. Jill’s loving, sweet, and kind nature will be missed and long remembered, especially by those at the Special Needs Adult Program at St. Andrew United Methodist Church in St. Albans.

Leanndra Dawn Nez died June 6, 2009, in New Mexico. Leanndra was an 8th grader who loved to travel, socialize, listen to music and collect monkeys. She was preceded in death by her brother, Darnell A. Nez who also had XP.

On February 17, 2008, Merve Uluyardimci succumbed to a bacterial infection a week after being rushed to the hospital with blood poisoning. Merve and Ferhat Sömnez had been married exactly 11 months and lived in Germany. Merve is remembered as an amazing young woman, full of life. She took ill during the time many were gathered at Owl Patrol in England. She died at the age of 23.

We will miss them and keep their families close in our hearts!