The urge to give back is a little different for everyone. What motivates one person to volunteer may be very different from what pushes (or pulls) another.
Every day Children’s Tumor Foundation volunteers give their time, talent, voice, effort, energy, and love to support our mission to end NF. They show up when the sun is out and when the rain falls; before the sun rises and after it sets; when there are a million other demands on their time.
This week, National Volunteer Week, is a chance to show gratitude for all the big and small ways these volunteers make a difference in the lives of those living with NF. We asked some people to share why they volunteer for the Children’s Tumor Foundation.
Melissa M.
Helpless. It’s a word that every NF mom, dad, caregiver, fighter understands. And as a mom, it’s the last way you want to feel when it comes to your child. I volunteer because I know what it means to feel helpless. NF is front and center every day of our lives. Each day brings a whole new set of challenges.
For me, working to fight NF means we get to take control. It’s our chance to raise awareness. Our chance to raise money. Our chance to not feel helpless, but instead feel HOPEFUL. That is why I volunteer.
To anyone thinking about volunteering, I say go for it! Start small. Reach out to the amazing staff at CTF. Reach out to other NF moms. The sense of purpose and that glimpse of hope makes it so so worth it!
Pictured with her family and her NF fighter
Jessica C.
I have NF2, and I feel like it’s my responsibility to raise awareness for NF. Unfortunately many of us “NFers” do not have that option or ability to do so, and since I’m able to volunteer, I feel like I am volunteering for all of us.
As cheesy as it may sound, [volunteering leaves me feeling] more at peace with my NF, and myself in general. I feel like I am apart of finding a cure, and if not for me for younger generations that are also affected by this.
It’s 100% worth it [to get involved]; if you ever attended an NF event, heard stories, read stories via social media, etc, you will understand how rewarding it is when you read about clinical trial breakthroughs. Any amount of time and effort makes a huge impact in coming closer to end NF. Mahatma Gandhi once said, “Be the change that you wish to see in the world.”
Pictured at a CTF event
Jennifer R.
I volunteer for Children’s Tumor Foundation for my daughter Chloe, and for all of the other families affected by neurofibromatosis. I want to educate as many people as possible about what NF is and how they can help to end NF.
Volunteering for CTF makes me feel like I am making a difference, and it gives me hope. When Chloe was diagnosed with NF1 in October 2018 I felt like my world had fallen apart. I remember sitting with her neurologist asking questions and sobbing because there was really NOTHING I could do to help my child. After the initial shock I started to educate myself on neurofibromatosis and the first place I looked was ctf.org. I knew then that volunteering was my next step.
My advice to anyone that is considering becoming involved is that you can make a difference. Whether it’s participating in one of the Shine a Light Walks, creating a Facebook birthday fundraiser, or simply educating others about NF. Every single person that chooses to become involved brings us a single step closer to finding a treatment for NF patients.
Pictured with daughter Keira, 2; daughter Chloe, 9, has NF1.
Vanessa D.
Having a son with NF makes CTF dear to my heart, all I can do at this time is raise funds to one day find a cure for my son and so many affected by this condition.
Volunteering makes me feel closer to the cause, helps me learn and be involved with so many affected by the condition. It allows me to give a little for so much given to my son already.
Taking the steps to become a volunteer can feel very scary, you might think you are not sure how or what to do, but once you get in, your story is the force behind you. It makes you feel you have the power over a condition you can’t erase from your dear ones. It helps you connect with people facing the same challenges, and that you are not alone.
Pictured at a CTF event with her NF Hero
Rebecca B.
When I first started volunteering with the CTF, I did it for my son Sloan. I wanted to learn about the condition my son would live with for the rest of his life, and to introduce him to others who would understand his struggles. I wanted to be involved in helping find effective treatments, or even a cure for him in the future. After spending time with other families in the NF community, I realized that while my main purpose was still for my son, I wanted to do it for others who live with NF also. I don’t want them to have to worry about what their next MRI might reveal, what others may think of the way they look or act, or how it might effect their future.
CTF is committed to finding those treatments and that cure that we all so badly wish for. They also make you feel like you matter, that your family matters, and that your situation matters. When Sloan was first diagnosed, I reached out to someone who volunteered for CTF and they put me in touch with people who could help me understand our new lives. CTF as an organization and the volunteers who work with them, make you feel like you are family. Since our family became involved with the CTF and I started volunteering we have felt like, while others may not understand the struggle, our CTF family will and they will help us through it.
My advice to someone who’s considering becoming involved with volunteering would be to just do it! There are so many great mentors within the CTF volunteers and you can learn so much from them. Don’t be afraid to tackle a project because you will have so many people out there willing to support you. We all have one goal and that is to find a cure for the ones we love, so we want to see others succeed in their fundraising and volunteer efforts.
Pictured at a CTF event with her NF fighter
Clare C.
I am honored to be recognized for contributing to CTF’s mission. The only thing that comes to mind when asked why I got involved with CTF is COLIN!! Colin is my reason. Colin is my beautiful, happy, athletic nephew who loves Michigan and the Jets. He is shy and has the best smile.
Before Colin was diagnosed with NF1 in 2013, I never heard of neurofibromatosis. I felt so helpless that there was no cure or anything I could do to help him or his parents, Michael and Heidi. I set out to educate myself on what is NF. I wanted to follow Colin’s parents’ lead.
Colin’s parents first got me involved with CTF through Cupid’s Undie Run. They were running in North Carolina and I live in NY. I helped the only way I could. I asked everyone I knew to donate to them. The following year we started to run the New York City event. Running half naked through the City seemed the perfect way to raise awareness and funds for NF. The first year was an unbelievable experience. My husband and I ran for two more years. We met people from all over who want the same thing as us… a cure! Each story made me want to find a cure even more!
We wanted to do more. For the past four years, my family has held a golf outing. It is such a great day. The smiles on Colin’s and his parents’ faces light up the room. They know everyone who is there comes for them whether it is a contribution or a hug.
I joined the CTF NF Endurance team and ran the NYC Half Marathon. CTF helped make a bucket list item come true. The experience is breathtaking and the fact that I raised money CTF research made the day even better!
My children have also gotten involved in educating others about NF. This past January, my daughter’s Daisy troop had a meeting dedicated to NF. Julie from CTF came out to educate them about NF and the challenges people with NF faces. The meeting was so amazing, hearing the girls say neurofibromatosis warmed my heart. Their parents mentioned how they had all gone home to tell their families about NF. Like me, most never heard of it until now. I feel like the more people who know about NF, the better.
For me, volunteering for CTF is extraordinary- the staff makes you feel like family from the first hello. And it is a family; the people I have met through the different events are family. We are all fighting for the same cause.
I know I would not have been involved with CTF if Colin wasn’t affected. He has taught me so much these past years. He is the reason I practice saying neurofibromatosis every time I wear my “I Know a FIGHTER” shirt. I fight for Colin.
Pictured at a CTF fundraiser
Kerry M.
I volunteer for the Children’s Tumor Foundation to make a difference for my two daughters who were diagnosed with NF1 when they were five months old. Our family had never heard of neurofibromatosis when our girls were diagnosed, and we felt incredibly helpless.
I knew one way I could make an impact on my daughters’ futures was by raising funds for research and raising awareness for NF. Thankfully, CTF has many opportunities and avenues for people to get involved in their local community. And in my case, I created my own opportunity by starting the San Antonio NF Walk in 2016. Honoring NF Heroes and their families on Walk Day, seeing buildings in San Antonio light up blue and green for NF Awareness Month and watching the progress and success of the MEK inhibitor trial, knowing I made a contribution in some way, is beyond rewarding. I want my girls to know that I’ve done all I can to fight NF for them.
I encourage anyone with ties to NF to consider volunteering and becoming a part of the bigger picture. There’s a role for every kind of skill, experience and time commitment, and no contribution is too small or insignificant. The ripple effect is powerful. The impact we have made in San Antonio through support groups, awareness events, patient education and uniting the NF community, all because I channeled my feelings of helplessness into action, is remarkable. You can do it too!
Pictured with her family and her NF fighters
If you would like more information about volunteering for the Children’s Tumor Foundation, click here or email volunteer@ctf.org.
