Volunteers are the backbone of the Children’s Tumor Foundation. By working together, we have the fortitude to meet our challenges, accomplish our goals and engage the community. Volunteers at the Children’s Tumor Foundation plan, act, support, inspire, love, and lead.
We value and love all our volunteers every week, and are pleased to introduce you to just a few who go the extra mile to raise money for critical research, drive awareness, and engage the NF community.
Shelley Pesta
Denver, CO
What are the different ways you volunteer with the Children’s Tumor Foundation? I am the Colorado Chapter Leader and the Denver NF Walk coordinator. I also volunteer at the NF Clinic at Denver Children’s Hospital and I help with all of our Chapter events. As well, I speak and run at my local Cupid’s Undie Run. I lead Team Jeremy for our Walk and dress as a super hero, write in our local newsletter, attend National NF Forums and collect donations for our silent auction. I’ve spoken on the radio, at high schools, cheered for our NF Racecar, represented CTF on the news and spoken to congress in DC.
Why do you volunteer with the Children’s Tumor Foundation? I volunteer for CTF because my son Jeremy Ashworth (21 yrs) has NF 1. His was a spontaneous mutation, but he went undiagnosed for 11 years. He is my NF Hero! He is such a great guy and he has a mild case so I am able to volunteer and help others. I want to draw awareness to my community. My future grandchildren could have NF so it is so close to my heart to find a cure.
What is a favorite memory you have of volunteering with CTF? My favorite experience volunteering (which is very difficult as I have so many!) was one that touched me the most was when I was volunteering in our NF Clinic and I met a 9 year old girl who has NF1. She told me she had never met anyone with NF before. I went to the next exam room just to meet a girl about the same age with glasses too and same ethnicity. She too had never met anyone with NF. When they were both done, I had them meet! They exchanged their stuffed animals they had brought and their parents exchanged information. They said they would always remember that day! I cherish the special moments like this when I’m there.
What advice do you have for other members of the NF community thinking about getting more involved? My advice to new volunteers is to just jump in! It is so rewarding and my family has been blessed by my involvement. The first time you hear “you are an angel sent by my prayers” it makes it all worth it! All six of my children volunteer at our events and my husband is behind the scenes packing the trailer or setting up tents. I am lucky to have a wonderful local NF family who I love and a national NF family I get to see every year at the forums.
Chris Clayton
Katy, TX
What are the different ways you volunteer with the Children’s Tumor Foundation? I am a committee member for the Houston NF Walk.
Why do you volunteer with the Children’s Tumor Foundation? I volunteer with Children’s Tumor Foundation to fight NF on behalf of my beautiful daughter, Danielle. After participating and organizing for two years, I continue to be inspired and motivated by the amazing people I have met along the way.
What is a favorite memory you have of volunteering with CTF? 2015 was the first year of the Houston NF Walk. We weren’t sure what to expect. The morning was a whirlwind as we scrambled to keep everything running smoothly, but then we stopped to take a group photo and it all sunk in for a minute. There were so many people crowded around. It was a loud, unruly mob…it was perfect. That’s when I realized we had underestimated what God had planned. We had underestimated our family, our friends, the Houston NF community, and ourselves. It was a moving experience….and the wing-eating contest was awe-inspiring…in a different way.
What advice do you have for other members of the NF community thinking about getting more involved? Seek out those in your community that are affected. As you talk more about NF, you will be surprised to learn who has a grandson, or a roommate, or a daughter that is living with NF. Most of the people you meet wish they could do something, but don’t know how. CTF can provide the tools and the guidance to turn your passion into action. Also, if you are able, attend the NF Forum which is a national patient and family gathering hosted annually by CTF in different cities across the United States. There is no better place to get connected with the NF community and to gain an understanding of the momentum of CTF.
Rhianna Curotto
North Grosvenordale, CT
What are the different ways you volunteer with the Children’s Tumor Foundation? I have been the walk organizer for 4 years so far! I’ve hosted craft fairs to raise money for walks/walk expenses as well as my amazing counterpart Sarah Lafevre hosting yard sales and bake sales to raise funds for the walks as well. We also attend 1st Friday events in Putnam CT to spread awareness of NF and CTF.
Why do you volunteer with the Children’s Tumor Foundation? I love organizing walks and being able to bring the community and other people with NF together for a day filled with fun, awareness, togetherness , and where we are all working toward the same goal: a cure.
What advice do you have for other members of the NF community thinking about getting more involved? We are always looking for more people to become involved because there is power in numbers. The more people we have involved, the more powerful and forthcoming we are. My advice to someone would be , do not tackle this on your own! Try your best to build a team to support you and help you. You’ll accomplish so much more and have more fun! My favorite memory would be our 3rd annual walk. It was so successful with dollars raised, attendance, raffle prizes, and entertainment!
Blytheanne Leva
Philadelphia, PA
What are the different ways you volunteer with the Children’s Tumor Foundation? I found CTF when Arden was a baby, and I have volunteered ever since. I spread awareness everywhere I go by wearing CTF gear and talking about NF to anyone who will listen. I set up awareness booths at community spring flings, I participate in the Philly Walk, and I go into Arden’s class during May and talk to the teachers, staff and students about NF. I host a few Dine & Donates throughout the year, I always represent CTF at CHoP NF symposiums, and I convinced my husband’s work to have a golf outing benefitting CTF. Recently, I met with a Girl Scout troop to present the kids with hands-on NF activities. I always get a team together for Cupid’s Undie Run. Before I was diagnosed with MS, I did the Rock n Roll 1/2 Marathon raising $5,000. It took me forever, but I did it! We consider April to be our biggest volunteer month. We host Arden’s Tea Party With a Twist – it is a HUGE party! We have food, drinks, raffles, games and live music! We raise money and awareness every chance we get!
Why do you volunteer with the Children’s Tumor Foundation? I volunteer for CTF because I want a cure for my child. I have also made so many friends that are touched by NF to varying degrees. I want a cure for them too! The doctors like to say there is nothing I can do about Arden’s disorder, but working with CTF takes some “power” away from NF and gives it back to us, the worried parents or NF sufferers.
What is a favorite memory you have of volunteering with CTF? I hate NF, but because of this unpredictable disorder, I do have so many wonderful memories. Last year my friend and fellow NF Mamma, Lara, took me to NYC for the CTF Gala! At the walk my friend, NF Hero and fellow NF Mamma, Becca Grisollo, nominated me last year’s NF Champion. And how could I forget, when my Christmas Tree fell, smashing most of my ornaments; Lara, Gwen and Becca came to my rescue sending me replacement ornaments! I got a Cupid, a western ornament to commemorate our trip to Forum last year, and an ornament of my kiddos!
What advice do you have for other members of the NF community thinking about getting more involved? Volunteering for CTF, makes you feel like you are doing something, when the doctors say there is nothing you can do. I feel that EVERY person affected by NF, should do whatever they can do to get us all closer to an NF cure. You will feel a little bit better about this awful situation you deal with every day. CTF makes even your smallest efforts in fundraising and awareness raising seem appreciated. The support that you will feel from CTF, NF Friends, and the community will make you feel like a cure in our lifetime is possible. That’s what we all want!
Cindy Thurston
Warren, PA
What are the different ways you volunteer with the Children’s Tumor Foundation? I was a member of the NF Endurance Team in the past, I have attended a Summit in NY City and have been an advocate for NF since 2013. I have worked with the Warren County Commissioners to have a Proclamation put into place 2015 and 2016, volunteered for NF Walks and I am currently the volunteer representative for Warren County, PA. I have also attended Community Events in the area where an awareness table was set up.
Why do you volunteer with the Children’s Tumor Foundation? I love meeting new people and spreading awareness and educating others about NF.
What is a favorite memory you have of volunteering with CTF? I would have to say attending and running in the NYC Marathon in 2013 and having my then fiance meet me at the end. We are now married and will celebrate 3 years this May.
What advice do you have for other members of the NF community thinking about getting more involved? Just do it! You will never know who you will come into contact with. You may be the voice to that one person with NF that has been too afraid to come out and talk about the condition themselves.
NF Walk Volunteers
Everywhere, USA
To the NF Walk planning committees who spend months scheduling dates, obtaining permits, reaching into the community, talking to media, securing food donations, setting up fundraisers, recruiting helpers, asking for sponsorships, and thinking up fun activities for the kids…
To the NF Walk Organizers who get up early and stay out late, collect items for raffle baskets, set up tables, check in walkers, paint faces, serve food, and clean up…
To everyone who does a million little things behind the scenes that make our NF Walks the fun, successful events they are, WE THANK YOU!
Krista Fredrick
Round Rock, TX
What are the different ways you volunteer with the Children’s Tumor Foundation? I serve as one of the event directors for Cupid’s Undie Run in Austin, Texas and as a member of the NF Registry Task Force.
Why do you volunteer with the Children’s Tumor Foundation? I was diagnosed with NF1 at the age of six months old. Back then, little was known about NF and the doctors gave my parents a rather bleak outlook. Fast forward 31 years later and despite a few ups and downs, my condition has remained relatively stable. Since I am the only one in my family with NF, I often felt alone even though I had an amazing support network. It was always an aspiration of mine to find a way to raise awareness and connect with others who are fighting NF each day. When I first heard about Cupid’s Undie Run, despite no prior event planning experience I knew that I had to bring this fun/crazy event to Austin (we like to keep things a little weird here, and I knew my fellow Austinites would love it). I can definitely say that it was one of the best decisions I have made to date. I tend to find myself going through withdrawals once Cupid’s is over each February, so I have really enjoyed the opportunity to be a part of the NF Registry Task Force. It is such a vital tool for physicians and those affected by NF!
What is a favorite memory you have of volunteering with CTF? There are so many memories that stand out but looking at the big picture…Truly… the best part about volunteering with CTF, is that I have this amazing support network all over the country! I also have the opportunity to meet so many passionate and amazing individuals (such as my amazing Cupid’s co-director, Karen Rabon), that I never would have met otherwise.
What advice do you have for other members of the NF community thinking about getting more involved? Anyone who is interested in getting more involved should just go for it and reach out to CTF! For example, there are so many businesses that love to give back a percentage of sales and all you really have to do is fill out a form or just ask. We are more connected than ever and I would encourage people to connect with others on Facebook or through one of the NF support groups. Each and every one of us has the power to make a difference, no matter how big or small.
Shannon McNall
Meridian, ID
What are the different ways you volunteer with the Children’s Tumor Foundation? I am the Idaho NF Walk Organizer and a member of the Advocacy Task Force.
Why do you volunteer with the Children’s Tumor Foundation? At first I volunteered because it was something I could do to help my son. But within weeks of becoming involved it became so much more than that. I began to meet other volunteers and CTF staff. I learned about their stories, their kids, and their motivation for wanting to be a part of the organization. I started realizing I wanted to fight for them as well. Now I can’t stop until there is a cure for everyone. I believe CTF is the organization that is going to find it.
What is a favorite memory you have of volunteering with CTF? My favorite memory is watching the NF Heroes at our Walk. They have so much going on in their lives therefore it is so wonderful to see them relax, have fun and been honored.
What advice do you have for other members of the NF community thinking about getting more involved? Don’t be afraid to jump in. People always tell me “I would volunteer, but I don’t have anytime”. There are so many volunteer opportunities with varying time commitments. Organizing an event, volunteering the day of, letter writing, community building or spreading awareness – there is a fit for you.
Anthony DeMott
Staten Island, NY
What are the different ways you volunteer with the Children’s Tumor Foundation? Some of the ways that I have volunteered with the Children’s Tumor Foundation is by providing race day support at cheer stations for the NYC Marathon, the NYC Half Marathon, IRONMAN Florida and other races. I’ve also helped the CTF staff at expo booths and most recently at the NYC Tri Expo at Citi Field. I’ve also tried to offer support to our athletes on our Facebook page and via email.
Why do you volunteer with the Children’s Tumor Foundation? I love volunteering in order to spread awareness of NF, a disease that too many people have never heard of. I especially enjoy race day support for athletes particularly towards the end of races. The look on an athlete’s face, even those who aren’t part of our NF team, when you’ve called their name or just encouraged them through a tough spot is priceless. By having the chance to work at expos gives the opportunity to meet our athletes and “meet and greet” other athletes from around the world. It also gives me the chance to meet NF families and to make amazing connections with them.
What is a favorite memory you have of volunteering with CTF? I think that my favorite memory as a volunteer was working at the NYC Marathon Expo and meeting our athletes from Ireland and from around the world here to celebrate, not just the race, but the entire NY experience. A close second was being at mile 23 on the route and watching runner’s faces light up when they’ve seen and heard our cheer station, watching their “how am I going to get through this” looks turn into wide eyed sprints to the finish.
What advice do you have for other members of the NF community thinking about getting more involved? I would so encourage everyone to volunteer in some degree. My favorite is being out on a race to offer support. I would also thoroughly encourage NF families to be part of our NF Hero program in which an athlete “adopts” a hero. This is a life changing program in which athletes learn about their hero and their family, heroes support their athletes with letters and encouragement and in the great majority of times, each pair create an incredible bond. From personal experience, the bond between families become life-long. Small volunteering opportunities don’t take a lot of time or effort but are rewarding and satisfying. The first time you witness the smiles erupt on an athlete’s face, even one you’ve never met before, after cheering them on makes it worth the time spent. There are also opportunities to help or organize an NF Walk, make support phone calls and a host of other opportunities. Trust me…..do it once and you’ll be hooked.
The Volunteer Leadership Council of the Children’s Tumor Foundation is a group of the Foundation’s most distinguished and dedicated volunteers. Members are recognized within the council for their significant contributions to the Foundation. For this, they are offered opportunities to further develop their leadership abilities, fundraising skills and to interact with fellow members of the NF family and other community leaders. Council members are the public ambassadors for patient education and community outreach within the Foundation. They are often the first contact that a family has when learning of a diagnosis. They are our most experienced volunteers in the areas of event organization, patient engagement, new volunteer recruitment, community support, and are champions of the NF cause. If you would like more information on the VLC, please contact volunteer@ctf.org.
