Latest News

Oklahoma Freewheel Fundraiser

We have some great news for everybody! Here is an easy opportunity to help keep Nevus Outreach moving forward on its ambitious goal of improving the lives of people everywhere affected by large congenital melanocytic nevi. It’s an opportunity to triple your donation of support....(more)

Raising Awareness Around the World

Mark Beckwith, Megan Stewart, and Kathy Stewart By Patricia McAdams, Staff Writer, Nevus Outreach Identifying the best ways to raise awareness about a rare disorder such as congenital melano...(more)

Jodi’s Epic Adventure:Climbing Mount Kilimanjaro to Raise Money for Research

“It’s not the mountain we conquer — but ourselves.” Sir Edmund Hillary
 First ascent of Mount Everest, the world’s highest peak, in 1953. Endurance By midn...(more)

Be a Part of the Photo Exhibit

Nevus Outreach is seeking people with nevi to be a part of an exhibit by Positive Exposure's award-winning photographer Rick Guidotti....(more)

Real Life Issues for Parents

Sharing resources and tapping the collective wisdom within Nevus families is a powerful reason for attending the biennial Conference and this session was no disappointment. Hurwitz started the meeting by offering three valuable handouts to families....(more)

The Moms’ Meeting: Sharing Stories of Success

By Patricia McAdams, Staff Writer, Nevus Outreach A roomful of moms gathered during the 2012 Nevus Outreach Conference to share stories and bounce around ideas for raising happy, confident chil...(more)

Nevus Outreach Joins Patient Groups Around the World to Bring Recognition to Rare Disease

BARTLESVILLE, OK – February 28, 2013, Nevus Outreach joins the European Organization for Rare Diseases (EURORDIS), the National Organization for Rare Disorders (NORD) and people around the world...(more)

Nevus Outreach Forms Alliance with Positive Exposure

Nevus Outreach is pleased to announce that New York-based award winning fashion photographer Rick Guidotti of Positive Exposure will capture images of people with congenital melanocytic nevi (CMN) for an artistic exhibit to premiere at the International Expert Meeting in Marseille France on September 28, 2013.  “The project attempts to re-define beauty using people with nevi,”according to Mark Beckwith, CEO of Nevus Outreach....(more)

Nevus Outreach to Observe Rare Disease Day

Nevus Outreach will be joining the National Organization for Rare Disorders (NORD) and others around the world in observing World Rare Disease Day on February 28, 2013. On this day, millions of patients and their families will share their stories to focus a spotlight on rare diseases as an important global public health concern....(more)

Adults with a Nevus and Parents

At the 2012 Nevus Outreach Conference, a session was held that allowed parents to meet informally with adults with a nevus (AWNs) in a small and intimate setting. This session was led by Megan Fields, herself an adult with a nevus. This session evolved into one of the most emotional and therapeutic gatherings of the Conference. It allowed people to speak with one another about the first person experience of having a congenital melanocytic nevus (CMN) — something few others would understand....(more)

Keeping Kids Safe

Harper Price, MD, pediatric dermatologist at Phoenix Children’s Hospital, in Arizona, cares for children with a range of genetic and congenital skin conditions including large congenital melanocytic nevi (CMN). One central focus of her caregiving role relates to keeping her kids safe in the sun....(more)

Children and Teens with Facial Differences at High Risk of Experiencing Negative Social Behavior

“Worries about other people’s reaction are one of the most frequently expressed concerns of parents of children with facial differences. These concerns are also an important factor in the decision for plastic surgery,” says Ornella Masnari, a psychologist and PhD student at University Children’s Hospital in Zurich, Switzerland. Regrettably, up to now, there has been little research in this field. Therefore, Masnari and her colleagues thought, “Let’s do our own study.”...(more)

Shedding Some Light on Neurocutaneous Melanocytosis

After the birth of a baby with an exceedingly rare condition such as a large congenital melanocytic nevus (CMN), parents are overwhelmed with questions and worries, only to learn of the risk of an even rarer neurological condition that can piggyback on CMN. Yasmin Khakoo, MD, talked to parents at the 2012 Nevus Outreach Conference in Texas about this condition, called neurocutaneous melanocytosis (NCM). Melanocytes are cells that produce melanin — the pigment that colors our skin. NCM refers to deposits of melanin in the brain or central nervous system....(more)

Parenting a Child with a Giant Nevus

Moms and pops at the 2012 Nevus Outreach Conference in Texas likely enjoyed the reflections of Shawn Reynolds, PhD, as he looked back on the birth of his daughter Kalina some five years ago.  After trying for several years to have a second child, he and his wife Janet had essentially given up hope.  Reluctantly, they gave away all their baby furniture and equipment, saddened that they would never need it again.  But four-year old Jenaya was not about to give up.  She still hoped for a baby — a baby sister — and decided to pray....(more)

Pairing up in Pittsburgh to search for clues

Long-time members of the Nevus Outreach family will recognize Miguel Reyes-Múgica, MD, as the recipient of the first Nevus Outreach research grant in 1998. Reyes, chief of pediatric pathology and director of laboratories at Children’s Hospital, University of Pittsburgh Medical Center, has long been dedicated to understanding large congenital melanocytic nevi (LCMN)....(more)

New Categories Proposed To Classify Congenital Melanocytic Nevi

In a paper accepted for publication in an upcoming issue of the Journal of the American Academy of Dermatology, Sven Krengel, MD, Ash Marghoob, MD, and their colleagues in Europe, Israel, and the United States, propose a new consensus classification for congenital melanocytic nevi (CMN). Krengel, Department of Dermatology, Medical University, Lübeck, Germany, says that this new classification tool will help interdisciplinary scientists and patient organizations in establishing an international platform for CMN research, thus furthering international collaborations....(more)

Jodi's Story

Roughly 20 years after the Beatles left Liverpool England for America, a little girl was born in that same town named Jodi Unsworth. She, too, would one day rise to stardom among many for her compassion for others and her dedication to making a difference in their lives. But first, this little girl had to grow up. And growing up was hard to do....(more)

Nevus Outreach News Archives

Nevus Outreach archived news articles....(more)