Paul Coleman's Adieu

It is with great sadness that the Nevus Outreach Board of Directors announces the passing of Paul Coleman, Chairman Emeritus on Thursday, March 4, 2021.
Paul was a passionate man who was resilient, caring, and committed to patient advocacy. He spoke from the heart and cared immensely about Nevus Outreach. His leadership and wonderful way with words will forever be missed by our Board and Nevus Outreach.
Paul was preceded in death by his son, Evan, in 2012. Paul is survived by his wife of 30 years, Elizabeth; daughter, Morgan; parents, Bernard and Margot, and brothers, David and Jonathan.
Nevus Outreach, Inc. is a mission-driven organization:
Nevus Outreach is dedicated to bringing awareness, providing support, and finding cures for people affected by congenital melanocytic nevi and related disorders.

A message from Paul:

I have always believed that one should start a story with an apology for the bar would be set too low that everyone will just trip on the apology and never be able to get on with the story, so it never gets read. This is not an elevator speech, nor is it an apology... it is more of a life saga with ups and downs, success and failures, there is life and death, relationships for the ages and it revolves around the simple concept of family. As if a family could be described as simple.

Next year, 2022, Nevus Outreach Inc. will celebrate its 25th birthday on July 1. We are hoping and planning for an extravaganza blowout suitable for The Bride of our Group, You - The people who are Nevus Outreach.

22 years ago today, we, The Coleman Family entered this “Nevus” world. I was a brand-new paramedic in Detroit at the time and when I first saw Evan, our newborn son, I asked all the right questions, except one. What were his APGAR scores? What was his Oxygenation? Were all his reflexes intact? What was his blood glucose? Then I asked the question that led to the road upon which Nevus Outreach stood…When are you going to wipe his back off?

You see Evan had been born emergency C-section and was in Neonatal Intensive Care lying huddled on his stomach under a heat lamp to warm him up. Looking down on my baby son I could not understand what was going on. In retrospect, I may have been the most mortified person in the room after that moment only to realize that I had to rush down to anesthesia recovery to be with my wife Lizy, and try and explain a phenomenon I had never experienced, knew nothing about, and had no understanding. I walked around a major teaching hospital in scrubs trying to wrap my mind around the inconceivable.

Within 24 hours we had three different specialists (OB, Peds – our pediatrician had babysat for this expert while he played violin with the Detroit Symphony when he was not on call – and our pediatric dermatologist.) We soon learned that we needed to see a doctor in the bigger hospital system down the street – Henry Ford Hospital.

Upon our arrival, we met Dr. Tor Shwayder who is a man of presence. Light on his feet, sharp of mind, and ever aware that his most precious audience in any exam room is the child. As an aside, one cold winter in Detroit a terrible virus intermittently visited Southeast Michigan and left behind dead and damaged children. One such child, our Evan was struck down with a post-viral myositis (he lost all strength in his legs, and he had heart labs that looked like he had suffered multiple heart attacks.) Dr. Shwayder found out about Evan, threw on his street clothes, grabbed a bag of rubber snakes, and told Evan to keep a few under his pillow at night to keep the nurses jumping. Evan bounced back and we kept moving.

In 1999, patient advocacy organizations for rare diseases were just gaining traction with the advent of the internet, and so we can credit Dr. Shwayder for introducing us to Nevus Outreach, and in 2000 we attended our first Nevus Outreach Conference at the Snow Mountain Ranch in Colorado. There we met a former major league baseball player, Matt Luke, and leading surgeon Dr. Bruce Bauer, and a young and vibrant researcher from Yale, Dr. Miguel Reyes-Mujica. The organization was young, and the talent spread thin, there was a lack of focus and mission, but there was an abundance of two things – enthusiasm and fear…not necessarily in that order.

Earlier in February 1999, when Evan was born, we were told by, Dr. Shwayder, our local leading expert that Evan had a 25% greater risk of spontaneously developing melanoma in his skin before he was 2 years old, and that he also had a 25% chance of developing a fatal brain condition called Neurocutaneous Melanocytosis (NCM) or infiltration of the covering of the brain. Of course, this was based on the limited information that the doctors had at the time; we now know these risks are significantly lower.

Two weeks ago, we held our second Outreach Angels virtual meeting to share some of the highlights of getting feet on the ground, mud under the nails, and sweat under the collar. I had the unenviable task of trying to frame a message of gratitude. You may not yet be an Outreach Angel or Member of a Giving Circle or a Committee Member; but there is plenty of time for you to make a difference, add your unique talent, and set aside obstacles and barriers to help develop progress. At this meeting, I shared:

“I am Paul Coleman, your Chair of the Board of directors for Nevus Outreach. I have been involved with this organization in one form or another since 1999. Along the way, I, (we) have experienced each fundamental piece of the Nevus Outreach Mission Statement. From the birth of our son to a horrific diagnosis and ultimate death which then drove me into the heart of the condition at the center of our mission, Congenital Melanocytic Nevi, researching the now-retired Nevus Outreach Registry and finally into serving in positions of leadership. Along the way, none of the awareness and support we received nor any of the groundbreaking research that has been done recently would have been possible without the tireless and often thankless giving of Nevus Outreach Angels, you. 

I have been tasked with the impossible job of trying to say “Thank you” for all you have given, all you continue to give, and in anticipation of a future where we don’t have to hear about people passing like Harry Motherwell, Brian Schroeder or Spencer Bacus. Thank and you are such innocuous words that even when put together they seem more of an etiquette response than a heartfelt acknowledgment. For those of you who do not know I work as a Physician Assistant or PA in the North Carolina Prison System. In that environment, few people have time for etiquette or niceties. Words have power and misused or tired words have little space for function.  My patients have taught me a new saying, that I would like to share with you, I appreciate you! 

Nothing we have done, nothing that we do, nothing we seek or intend to do in the future is possible without you, our Outreach Angels. This unique group of motivated givers has its roots in a distant small group of supporters who were Austin’s Angels, a group of patrons who were moved to action in the name of a child with NCM. That our patronage has grown over the years is not as surprising as the extent of ongoing involvement and connection.  

We, and when I say we, I mean I am tired of virtual meetings and the lack of physical intimacy that a personal; gathering might afford us, and yet, here we are. Right now, in a hospital in Chicago, another child named Austin is fighting for his life. His mother was our faithful Board Secretary for the past 2½ years. Their family is stronger for the awareness we have brought about through Nevus Outreach. A child named Keasey has been in and out of Seattle Children’s hospital these past couple of months, and while she has struggled to define her ‘normal’ childhood, her family, particularly mom, has known our ongoing support even as she also gives back to the organization. Both of these children, their families, and we at Nevus Outreach will benefit immeasurably if we can begin to identify cures for the potentially fatal outcomes that can arise in CMN. 

So, on behalf of Nevus Outreach, the 4000+ people in our Facebook Group, and we the people who serve you as the Board of Directors, I do not just say Thank you! I tell you we appreciate you, for without you we are nothing.”   

During our Zoom call, we asked: What are the barriers you see that stop our constituents from joining a committee? Participants answered, and I give my comments here:

  • Awareness that a committee may or may not exist.
    If you have breath in your lungs, you have time and a voice, then a committee could use your input
  • Time Commitment
    Leadership finds the paths, people take the paces, walk when you can.
  • Description of role and responsibilities
    Each Committee has a Charter – Purpose, timeframe, mandate.
  • Clarity of necessary expertise or lack thereof
    In a room of blind people, the one eye-d man is King, don’t doubt you! We were all doubters to begin with.
  • Who else is on the committee?
    Depends on the Committee. Ask as to see if you know or want to work with someone you might like to get to know.
  • Never been asked.
    Well, you have now been asked

But why now? Why the urgency? As I stated at the beginning of this note I have been involved with this organization and its offshoots for over two decades. Along the road we watched our son pass away from CMN complications in 2012, and my original research in 2016 helped change the direction of novel therapy investigation for possible cures. But this past Labor Day, just after my one-year anniversary as your chair of the Board, I found an abdominal mass that turned out to be Stage IV Renal Cell Carcinoma, and soon after the New Year I was discovered to have brain metastases with seizures.

“There is something that is here is that the essentially visceral nature of having and/or loving someone with a nevus, and how it sparks passion, demands protection for our nevus-havers, and calls us to step up to roles we could have never imagined for ourselves. I think the hidden beauty of this moment is that for the briefest time, everyone is VERY familiar with what it means to step up to roles we couldn’t have imagined.” – My daughter, Morgan Coleman, 2021

It has long been my goal to not only build a strong dynamic and energetic Board of Directors for Nevus Outreach, but to empower those forward-thinking individuals to grow the organization where they have skills. I will not, cannot, step down from this organization; and yet I can no longer lead as I have. Nevus Outreach runs in my blood as I know it does yours every time you see someone who does not look just like you. The spotlight must transition to others, the focus of effort, the magnifying glass of change must pass hands, not to weaken its effect, but to empower it.

We need you – I need you to help pick up the mantle of responsibility. That mantle may be for a child. With more and more data showing how lives with Nevus are long and rich, they are also fraught with dangers that none can fight alone. It may not be a child, it maybe you, if not today then possibly tomorrow. This is my call to arms for each of you.

As I have stated, I cannot abandon you, I will not abandon you. Riding off into the sunset is not an option – my sunset rode off into the early morning sky on August 12, 2012. Each of you: child, parent, aunt, uncle, grandparent, OWNER of the term nevus. Your smiles are my sunshine, and your words are like winds of the ocean blowing breezes, and I anticipate basking in the glory of your future sunlight wherever I may be. Your paces have led you down a different path than mine, but we have crossed paths over the years. My path is etched and worn, it has been both narrow and high, perilous, and beautiful. Yours is no less magnificent, but it is yours and you now face a junction of decision, but you have the gift of time to make it. A journey with Nevus Outreach is not easy, it can be downright maddening and painful, but the power within the bonds of family and friendship run deep.

Consider Nevus Outreach, Inc: We have grown and strengthened our Board of Directors. We have attained and maintained a Platinum Seal GuideStar standing as a non-profit organization. We have weathered a Pandemic without dipping into our reserves. We have stabilized our financial situation, have contributed over $100,000 to research, and have added programs and programming to meet your needs and those of our community. While none of this could have been done without you, nothing more can be dreamed or imagined without your input.

As I step back from a role in the forefront, I do not wish for my voice to run hollow or bleak or distant, but to sound as a reminder to look up and forward, to seek the opportunities presented to do the right things. Frankly, one less white male voice at the top of an organization could hardly be a bad thing, right? My time as a classic leader has now passed me by. I hope I did not wait too long to acknowledge this, but there are now seats at the table where your voice, the voices of diversity, insight, change, and compassion belong.

Five years ago, I had a vision that in ten years no future person would have to suffer death by NCM. That seemed like a pipe dream, but it was a dream, and it had a deadline. Will I see it? Not for me to say. Can you write dreams? Give them deadlines and name then goals? Of course, will you?

In 1999, I had love, perseverance, and even through death, I would not yield in my relentless pursuit to make a difference for others. Two decades later I am a Physician Assistant (not a doctor, not a researcher). I try to be the best dad I can be, the best husband I can be, and I am now completing my term as the Chair of your Board of Directors in the most dignified and encouraging manner I can find, by trying to secure some safe space to work on my physical wellbeing. I have seen and been a part of great things in this organization, and have personally and professionally experienced tragedies and setbacks. But through it all I have seen the light of life in each of your eyes as you saw within yourself the capacity to do greater things by and through others around you with a common purpose.

Are you just a little curious about the bounds of your passion and what your capacity for leadership might be?

“It is a curious thing, Harry, but perhaps those who are best suited to power are those who have never sought it. Those who, like you, have leadership thrust upon them, and take up the mantle because they must, and find to their own surprise that they wear it well.”― J.K. Rowling, Harry Potter and the Deathly Hallows

I am no lightning-scarred Harry Potter, but as an owl comes to invite you to join the Hogwarts Castle of Nevus Outreach, perhaps under the stairs at #4 Privet Close, I could be your Dumbledore as you step into your great beyond.

I am requesting that the board create a position of Chair Emeritus to last one year for each subsequent Chair of the Board of Directors. The tasking for this position is to fulfill two roles: a space-filler awaiting a replacement board member, with only financial principal voting, and any specific task as assigned by the Executive Committee. You will never know how much I appreciate every one of you, what you have done to further this organization, and what dreams I hold for your continued success.