Nevus Outreach News Archives

 

Nevus Outreach archived news articles.

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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.  Continue Reading »

 

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.  Continue Reading »

 

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).  Continue Reading »

 

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.  Continue Reading »

 

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.  Continue Reading »

 

Stunning observation leads to medical discovery

Pediatric dermatologist Veronica Kinsler, MD, PhD, has been involved with caring for children with congenital melanocytic nevi (CMN) at Great Ormond Street Hospital (GOSH) in London since 1997.  But it wasn’t until about 2005, when she attended a Family Day at the CMN support group Caring Matters Now, that something curious caught her eye for the first time.  Continue Reading »

 

Finding Sanctuary Away From Home

The term, sanctuary, generally refers to a safe place — a place of refuge or rest. It is a holy place, where one can experience joy, be at peace, and come away renewed and inspired. The Nevus Outreach biennial conferences have been all of these things and more for nevus owner Danielle Stamatiou, 35, of Toronto, Canada.  Continue Reading »

 

2012 Conference and Reunion Will Break All Records

This summer's conference is on track to break all previous records for overall attendance, number of sessions, number of families, number of people with nevi, number of countries represented, number of presenters, scientists and researchers in attendance, etc…  Continue Reading »

 

Early-Bird Conference Sign-up Extended!

Due to a mix-up at the mail-house, our conference sign-up announcements were mailed to the wrong mailing list. We wish to offer our sincerest apologies, and let you know that we have extended the early-bird deadline for one month.  Continue Reading »

 

The Power of Community

On November 10, 2010, I sat in a hospital room watching brave, 14-year-old Megan. She had just had a walnut-sized piece of her brain removed because nevus cells were there, causing her seizures…  Continue Reading »

 

Please join us at the 2012 Nevus Outreach Conference & Reunion

Megan Fields, the Director of Development for Nevus Outreach, grew up with nevi.

Camilo, Whitney & Robin Cowper

My family has attended every one of the nevus conferences since the first one in 1998…  Continue Reading »

 

Happy Thanksgiving from Nevus Outreach

As we head into the Thanksgiving holiday, we want to pause and thank all the amazing people who have touched our lives at Nevus Outreach this year.  Continue Reading »

 

Grassroots Event Fundraising Campaign

Would you like to attend the 2012 Nevus Outreach Conference for free? You can! You can earn your entire family's sign-up costs to attend the 2012 International Nevus Outreach Conference to be held July 4-7, 2012 at the Marriott Solana Hotel in Westlake, Texas!  Continue Reading »

 

Save the date for the Nevus Outreach 2012 Conference and Reunion

You won't want to miss the Nevus Outreach 2012 Conference and Reunion to be held July 4 - 7, 2012 in Dallas, Texas at the beautiful Marriott Solana!

This year will bring some exciting new changes to the conference. For starters, we have added one more day to the length of the conference! We will be starting on Wednesday, July 4 and concluding on Saturday, July 7.  Continue Reading »

 

Using humor to cope with a nevus

While medical research reviewing the effects of humor on specific health outcomes is still in its infancy, doctors believe that finding humor in everyday situations reduces stress, encourages relaxation, improves self esteem, and enhances a person’s overall quality of life.  Continue Reading »

 

Nevus Outreach: Oozing with support for everyone

Regional gatherings, phone and online support groups, and the bi-annual conference are all intended to support families affected by large congenital melanocytic nevi  (LCMN) and/or neurocutaneous melanocytosis (NCM) and they do it with such a friendly flair.  Continue Reading »

 

Grassroots Fundraiser Campaign for Conference 2012

The Grassroots Fundraiser Campaign is officially underway! In conference years, money raised in the Grassroots Fundraiser Campaign goes to offset conference costs. Anyone can put on a grassroots fundraiser - it’s easy!  Continue Reading »

 

Megan Fields: Growing into her most important role

Megan Fields, 33, splits her work week between teaching public speaking at the University of Tennessee and serving as Director of Development for Nevus Outreach, Inc.  But her most important role, perhaps, is serving essentially as a role model for the young people in the Nevus Family and showing them that they absolutely can have a full and happy life and they can thrive.  Continue Reading »

 

Band-Aides and Blackboards: A platform for kids to step out of the shadows

Having been immersed in pediatric nursing for many years, Joan Fleitas, EdD, RN, knew kids with medical problems wanted people to know their conditions do not define who they are.  She designed Band-Aides and Blackboards to communicate this central fact to youngsters, parents, teachers, and health professionals.  Continue Reading »

 

Ambitious UK Gal to Climb Mount Kilimanjaro to Raise Money for Nevus Research

Until she was 16, in 1996, Jodi Unsworth thought she was the only person in the world with a giant congenital melanocytic nevus (CMN).  It was then, however, that she met pediatric dermatologist David Atherton, MD, of the Great Ormond Street Hospital, in London.  Atherton was the leading CMN skin specialist in the UK and it was he who first gave a name to the rare skin condition Unsworth had been born with and told her she was not alone.  Continue Reading »

 

Managing Your Worrying, And Why This Might be a Worthy Goal

In December 2004, a landmark research study was published in the Proceedings of the National Academies of Sciences that linked psychological stress to premature aging for the very first time. Specifically, health psychologist Elissa Epel, PhD, and her colleagues, made the stunning discovery that the telomeres in the cells of chronically high stressed women were about 13 years older, on average, than the telomeres of low stress women.  Continue Reading »

 

"Searching to Conquer" Funded through 2011

We are pleased to announce we have secured the funding for another year of our largest ongoing scientific research project “Searching to Conquer” being conducted by Dr. Bernhard Wehrle-Haller at the University of Geneva.  Continue Reading »

 

2011 International Expert Meeting Brief Summary

At the largest assembly of experts on large nevi and patients affected by them, in Tübingen, Germany, on May 6-8, over 100 people met to discuss current topics in scientific research and patient care.  Continue Reading »

 

2011 International Expert Meeting for Large Congenital Melanocytic Nevi and Neurocutaneous Melanocytosis Resounding Success

Nearly 100 health care professionals and patient advocates met at the University of Tübingen, in Germany, on Friday through Sunday, May 6-8, to discuss the research, management, and possible future therapies for individuals with a large congenital melanocytic nevus (LCMN) and neurocutaneous melanocytosis (NCM). A major focus as well was to provide psychological support for families.  Continue Reading »

 

Finding Answers About Large Congenital Melanocytic Nevi

In hospitals around the world, physicians and researchers are pondering how some cells in a developing embryo grow into a large congenital melanocytic nevus (CMN).  Most especially, they wonder what they can do about it, when a child is born with one.  Continue Reading »

 

Six Nevus Gatherings

During non-conference years (2011, 2013) it has becoming a tradition to have nevus gatherings in various parts of the country. These mostly social get-togethers give families a chance to share stories, play, talk about the latest developments and build camaraderie around our cause.  Continue Reading »

 

Welcome Kent Blount

Did you know Kent Blount joined the staff of Nevus Outreach in December? It's been a big year, with notable events taking place on all fronts: support, education and research. Our needs in the office are not getting smaller, so when Carolyn Glass announced she had taken a new job, we reorganized our precious resources and created a full-time position for a new Office Manager.  Continue Reading »

 

Nevus Outreach Welcomes Science Journalist Pat McAdams

In our effort to provide the best content possible, you may have noticed a new name in our bylines. Patricia McAdams, or “Pat” as we are coming to know her, is an award-winning journalist with more than 20 years experience writing scientific and medical copy for a general audience.  Continue Reading »

 

Four Nevus Families Reunited

Six months ago, we were strangers; today, we are the best of friends. Four families have come together in a strange city, all to face a challenge we never would have imagined. But as we have learned, blessings arise in disguise so many times, and the one here is obvious—truly wonderful friendships.  Continue Reading »

 

Donor Challenge Met!

Earlier this month, The Morgan Family Foundation issued a 2 to 1 challenge to the donors of Nevus Outreach. Great news! We have surpassed our goal of $67,500. A huge "thank you" to everyone who helped us achieve this!  Continue Reading »

 

Find Nevus Outreach on Facebook

Nevus outreach has expanded its web presence to Facebook. Faceboo­k is a free social networking service connecting individuals to their friends. The new Nevus Outreach Facebook Page provides us with a fun, relevant platform to update the Nevus Community about all sorts of news related to Nevus. On our Facebook Page, you can contribute photos and comments, meet others within the Nevus Community and keep in touch with old friends.  Continue Reading »

 

Danielle Stamatiou Installed as New Board Chair

Board member Danielle Stamatiou of Toronto, Canada has officially stepped in as the new Board Chair for Nevus Outreach. The baton was passed from outgoing Chairman Pierre Gremillion during the 2010 International Nevus Outreach Conference, held July 7-10 in Westlake, TX.  Continue Reading »

 

American Way Magazine Article Highlights Dean Rogers

Dean Rogers likes to study a subject until he understands it fully. Case in point: his knowledge of aircraft engines. Rogers began at American more than 21 years ago as a line mechanic, progressed to a systems mechanic, then transferred to the engine shop, where he is a Crew Chief in charge of mechanics who overhaul engines for Boeing 757s and 777s.  Continue Reading »

 

Donor Challenge Issued

It’s official: our wonderful supporters The Morgan Family Foundation have issued a challenge to the donors of Nevus Outreach: for every dollar you give to Nevus Outreach before December 31, they will give two dollars! They will do this up to $45,000.00 – meaning our goal is to raise $22,500.00 from everyone else, making our end-of-year fund drive goal $67,500.00.  Continue Reading »

 

Total Body Photography (TBP)

In July, we engaged Canfield Scientific's Derma-Trak Imaging Systems, probably the most highly respected Total Body Photography (TBP) providers in the country, to come to our 2010 conference in Texas and make this service available to anyone in attendance.  TBP is a medically prescribed procedure which dermatologists use to help them keep track of the appearance of facets of the skin.  In the case of large nevi, which are supposed to be "watched for changes," TBP is currently the only way you can tell if a pigmented lesion has changed.  Continue Reading »

 

The 2010 International Nevus Outreach Conference Memory DVD is now available!

We hope you enjoy the highlights from the 2010 Nevus Outreach International Conference, held in Westlake, TX. On the 28-minute video, you will surely see familiar faces...  Continue Reading »

 

Welcome to the new Nevus Outreach website!

We have striven to make this website a valuable resource to people affected by large congenital nevus. We hope you will use this website to keep up to date on the latest nevus medical news and all of the happenings at Nevus Outreach.  Continue Reading »

 

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