We were honored to represent our community in Washington, D.C. for Childhood Cancer Action Days! This vital event brings together advocates from across the country to speak directly with lawmakers about the urgent need for increased funding, research, and support for children battling cancer.

Action Days give childhood cancer patients, survivors, caregivers, family members, and advocates the opportunity to meet with their home state legislators in person, advocate for key policy issues currently before Congress, and ensure the voices of children with cancer are heard loud and clear. This year, we brought a few incredible NNCCF warriors to share their powerful cancer journeys and make an even greater impact. Their voices and experiences are crucial in helping lawmakers understand the real challenges families face.

Landen who was diagnosed with Ewings Sarcoma at the age of 15, says, “I had such an amazing time at the Capitol. It was a very enlightening experience to see how advocacy can make an impact on our representatives. While we are pushing the funding for children’s cancer research and preserving their right to quick and affordable care, the bar can always be set higher. The job is never finished for those who bleed gold.”

Executive Director, Brigette, who attended action days alongside these incredible families, says, “Hearing these families share their stories and everything they have endured due to a childhood cancer diagnosis was truly profound. We must do better for our children!”

 

You can make a difference by advocating for increased funding for childhood cancer research by signing the American Childhood Cancer Organization’s petition: https://www.tfaforms.com/5160998

Read about Era’s Perspective of the trip:
 

Era, a sweet and soft-spoken girl diagnosed with leukemia at age five, joined NNCCF in the nation’s Capitol for Action Days with her mom, Cheri. When asked to reflect on her journey, Era shared from the heart what the experience meant to her.

“She said the plane ride made her a little nervous when taking off and landing, but she is glad she pushed past her fear. She didn’t like the turbulence, because it made her feel scared when she would get that feeling of going up and then dropping. She really enjoyed being able to look out the window though, because she never thought she would be above the clouds. She fully enjoyed having a window seat and she continued to open and close the window throughout each flight. She enjoyed seeing how high up she was. At the airport, Era loved walking on the moving walkway. She thought it was cool to go faster than other people when walking on it.

Meeting with our Representatives made Era feel a little nervous since she didn’t know who she was going to be speaking in front of, but she knew it was important for her to use her voice to help others understand the significance of her story just like many others.

It also gave her confidence in knowing she was with other young people that had cancer stories. Also, being with NNCCF and the Tyler Robinson Foundation helped because she felt comfortable with the group and she thought everyone in the group was so nice. She appreciated the idea of all the other cancer survivors that would be advocating that day on Capitol Hill, because she knew they were all cancer warriors just like her.

Afterwards, she felt proud of herself because she knew what being a survivor meant to her so advocating for other children going through it was important to her to help any way that she could.

On Training Day Era had a lot of fun getting to hang out with kids her own age. When they first met they all discussed their diagnoses. She thought it was special that she got to hang out with a group of girls that were close to her age and that had similar interests.

One thing Era really loved about the trip was all the food. She couldn’t believe all the food that kept getting served at the St. Baldrick’s dinner, the night before training day. She felt like they just kept serving and serving her. Felamina’s was Era’s favorite restaurant because she loved seeing the “Nonna” in the window before entering into the restaurant. She ordered salmon that was topped with fish eggs and that was Era’s first experience trying them, but she absolutely loved the dish.

Going to the zoo made the trip feel complete. She loved seeing the pandas, because she thought it was silly to watch the Panda laying on its back while snacking on a bamboo stick and then when it got to the end of the stick it would throw it out to get a new piece. She felt like the animals were all so neat. The museums that she was able to visit were all so neat and special to Era. Being a girly girl, one of her biggest highlights was seeing the Hope Diamond at the National Museum of Natural History.

Era overall felt the trip was such a special experience. Era let me know if she were ever asked to advocate again on Capitol Hill she would say yes. If she could do anything different the next time around she thinks she would speak a lot more.”

Join us in congratulating Jonathan as our April Community Member of the Month! Jon has been a strong supporter of NNCCF from the time he first became involved through the Guns and Hoses Golf Tournament, where the Washoe County Sheriff’s Office takes on the Truckee Meadows Fire Protection District. He has had a crucial role in the continued success of the tournament and has helped to fundraise and spread awareness for childhood cancer in our community.

Read his full interview below:

How did you first get connected with NNCCF?
In 2012 I was asked to help organize our first Guns and Hoses golf tournament supporting NNCCF. This is our 13th year and going strong. After the first year I took over the fire side of the tournament.

What is your NNCCF “why”?  What makes you want to continue supporting NNCCF?
I enjoy helping provide families with support when the need is the greatest. I love that the money we raise goes to local families in our community.

What is one thing you’ve done for NNCCF that you’re proud of?
I am proud of how far we have come with the Guns and Hoses golf tournament and all the money we have raised to support local families. I’m also proud of starting a fundraiser involving first responders and their families coming together to support NNCCF that will last for generations to come.

If you could meet anyone, past or present, who would you meet and why?
I would like to sit down with my Great Grandparents and listen to how things used to be and how they overcame the hardships of that time while keeping the together and strong during difficult times. I would also go back and speak to a young explaining the value of family, friends, community, and to be more involved and selfless at a younger age.

Please join us in congratulating our March Community Member of the Month, Kehl. He was introduced to NNCCF when his daughter Kylee was diagnosed with cancer, and he has been carrying on Kylee’s Wish ever since. Kylee’s Wish began with a heartfelt conversation between a father and his daughter, sparking a fundraising journey toward research and one day a cure. “Being the smart little cookie that she was, she had an inkling that she might be going home prior to me going home, so with that, she turned the tables back on me and said, Dad, I want you to fight cancer for the rest of your life as well. So that’s what we honor with our t-shirts and team at (Shave for the Brave). That’s really what her wish was, to continue on fighting for other even if she wasn’t going to be here on Earth.”

Driven by Kylee’s heartfelt wish to protect other children from the pain of cancer, her father, Kehl, along with family and friends, formed Kylee’s Wish — a team dedicated to making a difference. This year marks 18 years of unwavering commitment, raising an incredible $768,000 for childhood cancer research. Read Kehl’s interview below:

How did you first get connected with NNCCF?
They supplied support, knowledge and resources when my family needed it fast.

What is your NNCCF “why”?  What makes you want to continue supporting NNCCF?
Great folks that have a really tough job, they inspire me to do better.

What is one thing you’ve done for NNCCF that you’re proud of?
Bring others into the fold that grow the community involvement to support NNCCF.

Please join us in congratulating our February Community Members of the Month, Jeff and Karen. Jeff and Karen, along with their children Noah, Aila, and Lily, have volunteered hundreds of hours and raised tens of thousands of dollars for the fight against childhood cancer. They are truly heroes for northern Nevada children and their families. Read Jeff and Karen’s interview below:

How did you first get connected with NNCCF?
In another life, Jeff was on the radio and looking for a worthwhile LOCAL charity to be involved with and promote. Jeff stopped by the NNCCF office to offer his assistance (I think they thought he was crazy) and we have been helping ever since. As Jeff got involved, opportunities became available for our entire family to get involved in different capacities.

What is your NNCCF “why”?  What makes you want to continue supporting NNCCF?
In the midst of an unimaginable diagnosis, NNCCF steps in to walk alongside the family and lighten their load so they can focus on the most important thing – their child. We aim to offer our unique gifts and talents to support NNCCF in that mission. Being able to get involved in various events, walk alongside several families, and be connected with the many ladies of NNCCF over the years has been a huge blessing for our family.

What is one thing you’ve done for NNCCF that you’re proud of?
Starting the Green for Gold St. Baldrick’s team, being a part of the committee of the Big Dig which has now become Dozers & Dirt and a huge fundraiser for NNCCF, incorporating the Washoe County Sheriff’s Office into NNCCF fundraising efforts and getting all of the WCSO vehicles to display NNCCF gold ribbons, meeting so many amazing kids and their families.

Please help us congratulate our January Community Member of the Month, Debbie “AboutTownDeb” McCarthy. “AboutTownDeb” has been a long-time supported of NNCCF, and was first connected with the organization through the Know the Gold Campaign. She has been a long standing community partner ever since, donating $2 from every bottle of “Deb 6.5 Wine” sold in partnership with Nello Olivio Winery. Click the link to learn more about the “Deb 6.5 Wine”.

Read her interview below:

How did you first get connected with NNCCF?
My connection with NNCCF began many years ago when I was invited to participate in the Know the Gold campaign. I joined the fundraising effort at Scheels by riding the Ferris wheel, making phone calls to family and friends, and staying on until my goal was met. It was such a fun and impactful experience!

From that first moment, meeting the incredible team members of Northern Nevada Children’s Cancer Foundation and the families they support, I knew I was part of something truly special. I’ve never looked back since. The love, smiles, and hugs shared by the families and the community are unmatched. There’s something so powerful about seeing families give back to each other—it’s a constant reminder of the strength and hope NNCCF inspires.

What is your NNCCF “why”?  What makes you want to continue supporting NNCCF?
My initial “why” was inspired by little Maddie. Over the years, my motivation has deepened, especially as I reflect on my own experiences. When my children were young, I was part of a Mommy and Me group, and one of the moms, whose son Robbie was diagnosed with cancer, asked for my support during his treatments. Walking with her through that difficult journey left a lasting impression on me.

What stands out most about NNCCF is their unwavering dedication to families. They are often the first to reach out and guide families through every step of such a challenging time. My “why” is rooted in the love, care, and hope NNCCF provides. I’ve made a promise to Maddie and all the other children and families I’ve met through NNCCF to never stop supporting their fight. I will always strive to give back, care, and show love without giving up.

What is one thing you’ve done for NNCCF that you’re proud of?
One of the things I’m most proud of is sharing the stories of NNCCF’s incredible children and families. I’ve found joy in supporting the cause through initiatives like Wine with a Purpose, where a portion of every bottle sold is donated to NNCCF. This is a personal way for me to honor my father’s legacy—his advice to “never stop loving and giving back.”

Maddie, and many other courageous children have shaped my commitment. Their strength and resilience remind me why I continue to do everything I can to help NNCCF make a difference.

If you could meet anyone, past or present, who would you meet and why?
The first person who comes to mind is Mother Teresa. Her unwavering kindness, her beautiful heart, and her ability to love without judgment are traits I deeply admire. She dedicated her life to serving others, and her actions proved that even small acts of love can make an extraordinary difference.

As “AboutTownDeb,” I hope to follow in her footsteps in my own way, giving back and making a positive impact on my community. Mother Teresa once said, “Not all of us can do great things. But we can do small things with great love.” This quote inspires me daily to approach everything I do with love and compassion, no matter how big or small.

Please help us congratulate our December Community Member of the Month, Ben. Ben was introduced to NNCCF through a few friends, and ever since he has donated his time and professional photography services to many of our NNCCF events throughout the year. Ben has captured and preserve some of our most incredible NNCCFF moments. Check out Ben’s photography business, Ben Craig Photography. Read Ben’s interview below:

How did you first get connected with NNCCF?
I’m lucky enough to call a couple of their awesome employees friends! I knew both Kelly and Cheyenne, they introduced me to NNCCF.

What is your NNCCF “why”?  What makes you want to continue supporting NNCCF?
Just the amazing work they have been doing and continue to do in the lives of so many people.

What is one thing you’ve done for NNCCF that you’re proud of?
I’m really proud that I’ve been privileged to be able to capture images some of their amazing events so all the people involved can look back and remember those moments in time.

If you could meet anyone, past or present, who would you meet and why?
Abraham Lincoln! He was smart, generous, and could find the good in everyone….and had a wicked sense of humor to boot!

Please help us congratulate our October Community Members of the Month, Carlos and Paige. Carlos was introduced to NNCCF when a colleague’s daughter was in the fight against cancer, and he and his wife, Paige, have since become some of our strongest advocates. Read their interview below:

How did you first get connected with NNCCF?
Kehl, a colleague of mine, asked me to shave my head to raise money for children’s cancer at St. Baldrick’s in 2008. His daughter, Kylee, was in the fight at the time. Right before Kylee lost her fight, she told her dad her wish was that no other child suffer from cancer. From that point forward Kylee’s wish became my wish and I continued to raise money and shave my head every year for the cause. Starting in 2013, I, along with my wife Paige, began a crossfit competition called Pulling for Our Little Heroes to raise money for NNCCF. This event has run every year, even though the pandemic, and has added various sports along the way such as weightlifting, volleyball and a 1mile/5k run. Little Heroes is still adding more sports each year and hopes to make a sports fest out of the event. This event is able to run so smoothly every year with the help of our amazing volunteers and crossfit gyms in this awesome community of helpers we call sidekicks.

What is your NNCCF “why”?  What makes you want to continue supporting NNCCF?
Having 3 boys of our own, Paige and I can’t imagine going through what these families have to endure with their children. We hope that any bit of help we can provide will take a small burden off these families. Until there is a cure for children’s cancer, we will keep pulling for our little heroes!

What is one thing you’ve done for NNCCF that you’re proud of?
Raising money for NNCCF. Over the past 11 years we have helped raise $836,590.

If you could meet anyone, past or present, who would you meet and why?
I would want to meet John Wooden so I can chat about leadership and how he did what he did as a coach.

On this #WarriorWednesday we’re celebrating Jayme! Jayme was diagnosed in November 2023 with a brain tumor and underwent a 13-hour debulking surgery on February 13, 2024, where she was sedated until the afternoon of the 14th. She is the first documented case of this type of growth in this location from what the team of doctors told her and her family. The unknowns of how this will continue to affect her life are daunting, but this warrior is fighting with everything she has.

Tell us about your warrior and their journey: 
Jayme was diagnosed with a substantial giant cell tumor of the clival in November 2023. She underwent a 13 hour debulking surgery on February 13, 2024 and was sedated until the afternoon of the 14th. They were able to remove 75% of the tumor. The remaining 25% has various crucial nerves that control breathing, swallowing, eye sight and tongue movements encased in it. Jayme is still having issues with her back from the compression at the stop of her spine and still has extreme headaches and dizziness at times. We are also dealing with anxiety and depression. Part of the area in the brain that controls emotion was extremely compressed given the size of Bob the blob. We are working with her team both at UCSF and here in Reno/Carson City to get the right medications to help with this. We also found her right vocal cord in paralyzed and will more than likely never function correctly.

Jayme is the first documented case of this type of growth in this location from what the team of doctors told us just before her surgery. The unknowns of how this will continue to affect her, probably for the rest of her life is daunting, but this warrior is fighting with everything she has. Because she is the first case, no one knows what to except, but we did get some good news this passed weekend. Her MRI on September 8th showed a slight decrease in size. BOB THE BLOB is getting smaller!!!! This doesn’t mean it will continue to shrink and it’s still possible for it to grow. Waiting to find out how often scans will take place to track its movement. Hoping the copper coil they placed to stop the blood flow to the growth will help it continue to shrink or at least remain the same.

How has NNCCF impacted your family’s journey?
The continued support has helped us at every turn. Whether it be a family event or just cheering her on through emails brings a smile to her face.

Is there anything you would like to add?
Thank you to our family, friends, and teachers who have been there for us and work with us. I never truly understood “It takes a village” until we were faced with this. Thank you to our village. You guys ROCK!!!!