Nevus Outreach families know Bruce Bauer, MD, as the surgeon who removes more congenital melanocytic nevi (CMN) than anyone else anywhere. But Bauer also cares for children, as well as adults, with congenital and acquired ear deformities, cleft lip and palate, craniofacial anomalies, and vascular lesions. He is, in fact, one of the most versatile and respected cranial reconstructive plastic surgeons in the world. Curiously, he traces the beginning of his skills as a surgeon to when he was growing up on Long Island.
We are pleased to announce that the tissue bank we have worked to coordinate for many years has been created, and is now receiving tissue samples. Our friends at Children's Hospital of Pittsburgh, Drs. Miguel Reyes-Múgica and Cláudia Salgado have asked us to spread the word.
Over many years connecting people together who are affected by congenital melanocytic nevi (CMN), many people have noticed what they think might be a connection between CMN and itching. Our friends at Phoenix Children's Hospital, Dr. Harper Price and Dr. Judy O'Haver, have begun a study to learn more about this.
2013 Freewheel is now a memory. As of this writing the total stands at 106% of the goal. This means all $26,000 of the match will come through, so the total for the 2013 Oklahoma Freewheel fundraiser sits currently at $39,767 (will you be the one to put it over $40K?). This warms our hearts here in the Nevus Outreach office.
A steep hill is no deterrent for Taylor Scott. While many take to walking their bikes up the hill, Taylor continues on. Even though Mark talks about Taylor being lazy on these treks, Mark is no where to be seen behind Taylor as he continues the intense hill climb.
Today I thought we would give you a little treat. This video will give you a little insight into our daily routine here on Freewheel. It starts early, and ends early in the evening, so we can start again early the next morning. This video is a bit long so I hope you enjoy it!
Taylor Scott has taken time to respond to Mark Beckwith's comments from his earlier videos. Taylor says he isn't worried about keeping up with Mark in the Oklahoma Freewheel; after all, he IS less than half Mark's age.
In this short video, Nevus Outreach Executive Administrator Taylor Scott describes the upcoming Oklahoma Freewheel event, and preparations for it, in some detail. He will be riding his bicycle across the state along with his boss, Nevus Outreach CEO Mark Beckwith, in a little over two weeks. Their goal is to raise $13,000 in pledges which will be matched by a very supportive donor and that donor's employer, for a total raised for the event of $39,000.00.
Identifying the best ways to raise awareness about a rare disorder such as congenital melanocytic nevi (CMN) has been a learning curve for players everywhere. About two dozen representatives from countries around the world met in Texas at the last Nevus Outreach Conference to share what they had learned, to review what had been accomplished recently, and to brainstorm how best to move forward from here. Mark Beckwith, director of Nevus Outreach, led this session.
By midnight on October 10, 2011, the temperature had plummeted to a brutal minus 40 degrees and ice was falling steadily from the sky, but Jodi Unsworth and her fellow trekkers were undeterred. They bravely climbed from their tents and set off on the final leg of their journey toward the peak of Africa’s highest mountain — Mount Kilimanjaro — soaring some 19,341 feet above sea level. It was a 10 hour-long climb into a raging ice storm, on a slippery slope, in the dark, with nothing to light their way but head torches.
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.
A roomful of moms gathered during the 2012 Nevus Outreach Conference to share stories and bounce around ideas for raising happy, confident children. This session was led by Kathy Stewart, mom to 16-year old Megan, who has both a large congenital melanocytic nevus (CMN) and neurocutaneous melanocytosis (NCM). Stewart is one of the co-founders of Nevus Outreach, and wife to Nevus Outreach CEO Mark Beckwith.
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.
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 in celebrating the sixth annual Rare Disease Day. This year’s theme, Rare Disorders Without Borders, highlights the importance of widespread recognition of rare diseases as a global health challenge. Rare Disease Day brings a unique opportunity to thank researchers and medical professionals all over the world for their hard work in this rare field.
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.
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.