Earlier this month, in celebration of the Foundation’s 40th Anniversary, 62 registered members of the Volunteer Leadership Council (VLC), our most active and dedicated volunteers, gathered for their annual Leadership Training Conference in Atlanta, GA. The conference allows VLC members the opportunity to have face-to-face interactions with staff and one another. They gain new insights about the latest scientific research, CTF program enhancements and marketing initiatives, as well as to have time to share with and learn from each other.
A long-time Foundation tradition of presenting awards to volunteers for outstanding service was revived in 2016. The Volunteer Recognition Awards (VRAs) celebrate the contributions of Volunteer Leaders in several categories from our newest up-and-comers to our most tried and true champions. Award recipients in 2018 were voted on by their peers from a pool of nominations made by staff and VLC Executive Leadership. The voting process proves difficult with so many worthy candidates.
The benefits to our awardees are numerous. When an event or a volunteer is given distinction, it can help to attract sponsors, participants and fundraisers by offering a level of integrity to the opportunity that may not exist otherwise.
This year’s VRA recipients are:
SHANNON MCNALL – VOLUNTEER OF THE YEAR (Boise, ID)
Shannon McNall lives in Boise, Idaho with her husband, Walter and two children: Carson, 10 (NF1) and Amelia (aka Millie), 8. Shannon came to the Children’s Tumor Foundation 10 years ago following her son’s diagnosis. She grew up knowing that she had NF, but her manifestations were so mild that she didn’t pay much attention to it.
“When my son was diagnosed with NF, I felt completely lost. I didn’t know anyone in the community or know about CTF. There were no resources. Throughout the course of volunteering, we have found so many individuals in our state and have created a new community, which is what I am most proud of. It is gratifying to know that I have been a small part of offering support, education and awareness, so no individual ever has to feel as lost as we did 10 years ago. We have a network and we are there for them.”
She began by connecting with people within her state and then became a Walk Organizer to further make those community connections and to raise the funds needed to End NF. Shannon has been the Volunteer Leader who steps up time and time again in so many ways. She has been involved with Task Forces in a leadership role for the past two years and as a team member prior to that. After organizing the Idaho NF Walk for 4 years, she wanted to take a step back from that event, but didn’t really know what she wanted to do instead. She came upon her latest brilliant idea quite accidentally. Here is the story:
“On the way home from school our son Carson was picked on by another student. The incident was quickly resolved as neighborhood kids banded together to stop it. What happened after is the real story. After the incident the same neighborhood kids started asking about NF and then their parents started asking. They wanted to help. The kids started a small cookie stand, one parent coined the phrase, ‘Cookies for Carson’ and our fundraiser was born.”
Shannon is now determined to not only bring awareness to NF, but also to bullying, all while raising money for CTF. She wants to raise $10,000 this year selling Cookies for Carson.
Newbie Award – MAUREEN HUSSEY (North Carolina)
Though not a Newbie to the NF cause, Maureen recently moved to Charlotte, NC with her husband, Kevin, and her 3 children, 11 year old NF Hero Maggie, 14 year old Jack, and 10 year old Ellie, where she is making a new impact as a Volunteer Leader. Maureen stays busy with awareness events and activities and has a new role as a CTF and REiNS Patient Advocate, “which is challenging me in a new way and allowing me to impact NF research on Maggie’s behalf.”
Length of Service Award – SHEILA DREVYANKO (Iowa)
Sheila has been engaged from the very beginnings of the Foundation in 1978 when she and her husband Tim were asked to start the Iowa chapter. Sheila manages the Adults with NF Facebook page as co-administrator and as an adult with NF, she understands the importance of providing support to fellow adult NF patients. “I have continued to be a volunteer because I feel it is important to be sure Adults with NF know they are not alone.”
Resiliency Award – WALT AND PRISCILLA STEENBERGEN (Rhode Island)
Walt and Priscilla are a volunteer power couple living in Woonsocket, RI with their two sons: Charlie, 14 (NF1) and Mitchel, 12 and their German Shepherd Benny. They began by chairing the Providence NF Walk for 8 years in a row and added a DIY event, Get On Board for a Cure three years ago to embrace their love of boating. “We remember when Charlie was first diagnosed and we went ‘down the rabbit hole’. Sharing our experience, knowledge, resources with other parents and adults with NF has been a tremendous source of pride for us.”
Top Walk Chair – JESSICA SAMBLANET (Ohio)
Jessica has two children, Kendall, 6 (NF1) and Finley, 8 with husband Brett. She chairs the NF Walk Cincinnati, which raises over $70,000 annually, and serves more than 500 attendees. “Seeing the NF families come together on the day of the Walk, is worth all the hard work I put in over the year. Helping a new family feel not so alone is one of the best feelings. I don’t know how I could deal with all that comes with NF, without my NF family, and volunteering is just another way to grow that and give back.”
NFE Superstar – DAWN LOWELL (California)
Dawn is an endurance athlete who lives in Granite Bay, CA with her husband, Andrew and her two children, Ava, 9 (NF1) and Reef, 12. Dawn has been involved with the NFE program since 2009 and is the Chair for the California International Marathon (CIM), which raises over $35,000 annually. Dawn works in the hospitality industry, enjoys travel and loves “getting out into the community and being a visible presence for CTF.”
Original Event – RACHEL MINDRUP/MANY FACES OF NF (Nebraska)
Rachel is an artist and Resident Assistant Professor at Creighton University in Omaha, NE. Rachel and her husband Jeff have two sons, Henry, 14 (NF1) and Fred, 11. Rachel began the project Many Faces of NF in 2010. “My son Henry’s diagnosis has been the motivation behind my series of portraits “Many Faces of Neurofibromatosis (NF). Through this series of paintings, I am the conduit, transforming genetic complications into something secondary and portraying the individual personalities first.”
Ardent Advocate – WALT STEENBERGEN (Rhode Island)
Walt has also been a strong advocate for his son, Charlie and for the NF cause on the topic of healthcare reform. In 2017, he was described by his wife, Sam as, “tireless in his fight for healthcare for our son and everyone [living with NF] and has been frequently in touch with our local representatives, including Senator Whitehouse.” Walt was able to get the attention of his Senators by sharing Charlie’s story and winning their support in the fight against the healthcare bill.
Awareness Ace – KELLY CARPENTER (Utah)
Kelly and her husband Scott live in Salt Lake City, UT with their three boys, Travis, 10 (NF1), Nolan, 16 and Barrett, 14. Since 2010, Kelly has volunteered in many capacities including, meeting with families at the NF Clinic weekly, helping to organize the NF Walk in SLC, assisting with the NF Symposium, leading task forces, and coordinating a various awareness and community building activities locally. Kelly has also been invited to speak on several occasions, mostly on the topic of her family’s experience with three different clinical trials. “We are not content to sit and wait-and-see. This is just the beginning of a new life, and hope for those living with NF.”
Top Fundraising Individual – CAROLANNE OWENBY (Georgia)
Carolanne started as an NF Endurance athlete in 2011, after her son was diagnosed with NF. She lives in Gainseville, GA with husband, Wesley, and children, Robert, 8 (NF1) and Kinley, 10. As co-director of the Little Heroes 5K in GA, Carolanne is making a significant impact through awareness and fundraising, but her NFE participation is what earns her the distinction as this year’s top fundraiser. Her team, Run 4 Robert, has raised over $56,000 in 2017 alone. “My biggest accomplishment I can claim is the fantastic team of people that I have surrounded myself with on this mission. As a group, we have informed a community that once didn’t know about NF into an aware and supportive community. Aside from that, the fact that we have raised a lot of money is the icing on the cake.”
Top Fundraising Event – DANCING WITH OUR STARS (Arkansas)
Dancing with Our Stars was originated by Lesley Oslica, from Conway, AR in honor of her daughter, Katie (NF1). It was first held in 2007 at the Annunciation Greek Orthodox Church with about 50 attendees and raising $25,000. In the years since, Lesley has grown the event tremendously and with the help of a committee of volunteers, in 2017, DWOS has become one of the premier, must attend social events of the year in Little Rock. Raising over $185,000 with 400 attendees last year, Dancing With Our Stars has a ten-year fundraising total of over $1 million dollars raised for NF research!
Top Fundraising NF Walk – NF WALK SEATTLE (Washington)
The Seattle NF Walk was started in 2014 by Christa Castanon, who was inspired by her now 6 year old daughter Cataleya’s diagnosis with NF1. With a debut fundraising total of $43,000, the Walk has grown significantly over just a few years, and in 2017 brought in $94,000 with 250 participants, making it the Top Fundraising NF Walk of the year!
Top Fundraising NFE Event – TCS NEW YORK CITY MARATHON (New York)
With 30 participants supporting the NF cause, this NF Endurance event raised more than $117,000 for NF research. Dr. Kaleb Yohay from NYU Langone Medical Center’s NF Clinic was the top fundraiser for the event and raised close to $12,000 himself and the NF Tuminators team, captained by Katherine Bloom and Cristina Ferruggiari, was the top fundraising team at $71,000.
