By Natalie Van Hoozer
NNCCF supporters, thank you all for calling, attending, and volunteering at our Know the Gold Radiothon on Friday, January 29. The energy was wonderful, and it is events like this one that help us motivate the community to make a difference in the fight against children’s cancer.
We would like to offer a special shout-out to Cumulus Broadcasting and their DJ’s for coming out to promote us. In addition to their help on the airwaves, it is wonderful to see the DJs in-person, in headsets, reporting on the event.
Speaking of people who came to Scheels, it was absolutely wonderful to have the Washoe County Sheriff’s Office Executive Staff join us. When they and representatives of the Reno Bighorns, including Bighorns mascot Bruno, were there together, things really got going! Everyone stopped to watch the “Dial for Dollars.”
Wondering what that is? Our wonderful community partners made phone calls while riding the super awesome Ferris wheel to raise funds!
On top of that, we had volunteers hard at work running the phone banks and receiving online donations ALL DAY! We even had some local groups like sororities come out and support us by helping to make hand-drawn cards!
All of these combined efforts helped us to earn $128,950.71, and the William N. Pennington Foundation matched $120,000! We would like to acknowledge the contributions of Conway Communications, Cumulus Broadcasting, Scheels, and Crown Beverages; without their support, this event would not have been possible!
By Natalie Van Hoozer
It’s holiday time! But what does that mean at NNCCF?
For starters, we cannot thank everyone enough for the gifts donated to us for the holidays. But did you know that we now have another way you can show love to our families?
View our holiday giving fundraiser here and when you donate $25 or more, you can send a dedicated certificate to the person of your choice. The certificate is just a small way to acknowledge that your generous contribution helps to brighten the lives of the families receiving support from NNCCF this holiday season. It’s a great gift for those hard to shop for!
By donating this way, you help us here at NNCCF to continue our mission. In 2015 alone we have helped over 100 families of children with cancer, emotionally and financially.
What Else Can I Do?
If you are looking to help us this season in another way, we have some ideas for you! Although we aren’t set up to have a large quantity of on-site volunteers in our office, we always need help fundraising and increasing our visibility in the Northern Nevada community.
To do this, you could:
By Natalie Van Hoozer
September is Childhood Cancer Awareness Month, so all of us at NNCCF are gearing up for an action-packed, fun month of advocacy. Here are some of our upcoming events and projects:
“Childhood Cancer Awareness Month”:
The month of September is a nationally recognized time for special attention to be focused on children who have fought cancer, children who are currently fighting cancer, and those children’s’ families. It is also a time to rally support for new research initiatives, new donations, and new projects to support the childhood cancer cause. September is also called “Gold Ribbon Month” because the gold ribbon is the nationally recognized symbol of childhood cancer.
The “Know the Gold” Campaign:
This awareness and fundraising campaign will last from September 1, 2015, to January 31, 2016. You will see NNCCF displaying and distributing gold ribbons and different gold-ribbon related items to spread information about childhood cancer and promote the gold ribbon as a symbol of childhood cancer. September 1 initiates the campaign, and it ends on January 31 with a pledge drive!
NNCCF’s “Tournament of Hope”:
Our golf tournament called the “Tournament of Hope” will be happening on September 21, 2015 at Montreux Golf and Country Club. This is one of our largest events of the year. If you are interested in participating in the tournament, view sponsorship opportunities here.
The tournament also features a reception afterwards, where guests are able to hear inspiring stories from NNCCF families and other community members.
Our Coffee Club, “Coffee with a Heart”:
An established program here at NNCCF, our “Coffee with a Heart” program works with Blind Dog Coffee, a local coffee company. The owner of Blind Dog Coffee, Mark Berry, is a childhood cancer survivor himself. He was diagnosed with cancer at age two that left him almost completely blind. Mark lost one eye and part of his other eye due to his cancer treatment as a child, but his personal challenges have not stopped him from giving back to others. He works through his company Blind Dog Coffee Roasters to help children in the fight against cancer and their families.
This September we hope to grow this amazing program! If you become part of our NNCCF Coffee Club, you will get two fresh 1-pound bags of coffee per month from Blind Dog Coffee Roasters while simultaneously giving to a local family in need. Please help us remind people about this wonderful program! View details here.
If you would like to volunteer/participate in these September events, or have any questions about Childhood Cancer Awareness Month or our upcoming events and programs, please contact us, we would love to hear from you!
Use the hashtag #KnowtheGold on social media when posting about Childhood Cancer Awareness month so we can stay updated!
During the month of June, our Executive Director here at NNCCF, Debbie Strickland, and some members of NNCCF families traveled to Washington D.C. for the Childhood Cancer Action Days. Here is why they went and what Debbie had to say about the trip:
What happens on Childhood Cancer Action Days?
“Each year we advocate for research appropriations, we need money,” Debbie said. “We always bring a family, we talk about how access to health is difficult, we talk about treatment, we talk about research.” Debbie also said that bringing a NNCCF family to Washington D.C. helps get the attention of politicians by “shaking their core” and reminding the politicians that childhood cancer affects real people and real families.
What is the #StepUp initiative?
As stepupforchildhoodcancer.com states, the social media hashtag “#StepUp” encourages all kinds of people, from those involved with cancer organizations to community members, to advocate for more childhood cancer research funding. In particular, organizations like NNCCF are asking for people to “step up” and put support behind the STAR Act.
What is the STAR Act?
Survival, Treatment, Access,and Research is what “STAR” stands for. The Act has yet to be formally introduced pending strong bipartisan support in the House and Senate to ensure that it will be in the strongest position to be voted into law.
This act is asking for all of the currently “fragmented” data about childhood cancer to be put together, to be compiled nationally. Data is available for all different kinds of childhood cancers like brain tumors, leukemia, and others, but the data has not been assessed as a whole. Specifically, baselines need to be set and understood for things like overall childhood cancer survival rates and how different childhood cancers compare to each other. This will help researchers and those wanting to create legislation better understand how the nation needs to fight childhood cancer. Once this happens, asking for research funding will be more efficient and more compelling than asking for money is right now, with research statistics and data scattered in different states and with different organizations. In essence, creating one, unified data and research effort will help to further the research cause for all types of childhood cancer.
What is the reason people lack awareness and education about the need for childhood cancer research?
Debbie answered, “If you’re looking at numbers in comparison to adult cancers, it’s a small percentage.”
With this in mind, Debbie believes that the government will hear out the largest entity, which, in this case, is adult cancer research. For groups like us, this is an important obstacle. As Debbie said, “Our numbers are small, but we don’t want our voice to go away.” For this reason, having a presence each year in Washington D.C. is important. Meeting with politicians is vital to display the passion and support that back the childhood cancer cause.
What can people do to improve awareness and education about childhood cancer research?
Debbie said, “It’s a beautiful thing that we’re in our state with a lot of our representatives. If you’re down in Carson City eating at a local restaurant, it’s likely that one of our senators is going to be sitting next to you.” Because of this proximity to our legislators, Debbie stressed the importance of letting those politicians know that groups like NNCCF have an impact in our community. If you see a politician. Don’t hesitate to bring up issues like the STAR Act, childhood cancer, or even NNCCF. It is important to let those politicians know that childhood cancer matters in the Northern Nevada community.
NNCCF would like to thank Barrick GOld for making this Washington D.C. trip possible.
By Natalie Van Hoozer
There is one topic that is always relevant to charity organizations: the use of funds. Many people who would like to donate money to charities hold reservations when donating because they are unsure where those funds might ultimately go.
We at NNCCF agree that these concerns are completely valid. Recently, four related cancer charities (one of which was a children’s cancer organization) were charged with fraud by the Federal Trade Commission.
As unfortunate as this occurrence is, it is an excellent reminder that, before you make your final decision about where to make a donation, it is wise to look at statistics about the nonprofit in question.
What You Can Do:
As the article Know How Your Charitable Donations Will Be Spent Before You Give by Clay Johnson states, a large amount of nonprofit data is available to the public, it’s like researching anything online! A Google search alone can reveal some helpful information about most organizations.
What Can Help You:
Specifically, the IRS Form 990 is commonly available, detailed, and has black-and-white information about how a nonprofit spends its money. Many 990’s are available with an Internet search, and there are also sites like GuideStar which provide 990s as long as one completes a free registration.
The legitimacy and impact of nonprofits is a common question, and there are many articles, websites, and organizations dedicated to explaining how to evaluate if a nonprofit is accomplishing goals that are in-line with how you would like your money to be spent. GiveWell.org is one such site, but many other sites are easily revealed through searching.
What If You Have Trouble Finding Information With a General Search?
If an organization’s information is not being made apparent with a 990 form or through other online resources, there are several other ways to obtain information. If an organization is just getting started or is small, that organization may not have a 990. They may also be small enough that they work with a sponsor organization. If there is a sponsor, it is wise to look into that organization’s spending to see where your money would end up upon donation. As a general rule, it is wise to try to understand the different organizations involved with the organization in question. Also, when considering small organizations, you may also want to try to contact the organization directly. The executive director or other staff person may respond to questions better than a large organization would.
In regards to NNCCF specifically, is important to note that 76% of our revenue goes to Programs and Services while 8% goes to Fundraising and 16% goes to Management and Development. If you would like to see this breakdown with helpful visuals, please take a look at our Annual Report on our website.
By Natalie Van Hoozer
Here at NNCCF, we are extremely thankful for all of the passionate, talented people who offer their time and skills to volunteer. You might be wondering though, “What can I do in addition to office volunteer work?”
Great question! Here are a variety of ways to volunteer your time and resources to help out NNCCF:
We always need dedicated volunteers to help with fundraising events like Brave the Shave! To do this, it is important to notify the staff at NNCCF that you are interested. It is even better if you can commit to helping in advance so we can plan volunteer tasks with you in mind!
Do you make crafts in you free time? Are you a photographer? If you have a special skill, NNCCF would love to utilize your expertise. By letting the NNCCF staff know what you can contribute, you can volunteer in ways no one has volunteered before! You might be orchestrating a fun new craft at our next event, for example.
Though this may sound like an ordinary way to contribute to the NNCCF cause, it is always an appreciated form of participating with our organization. Whether you make a monetary contribution, donate gift certificates, or donate some other item or service, the time and effort it takes to provide these donations is just as valuable as other volunteer activities.
Continuing with the theme of donating, a great way to raise funds for NNCCF is to donate the proceeds of an event to NNCCF. This event might be a bake sale, a neighborhood garage sale, a smoothie/lemonade stand, or a car wash at your school, church, or in your neighborhood- the possibilities are endless. These activities are also a great way to spread awareness about NNCCF in the community, so they have multiple benefits.
Even if it isn’t possible to hold a bake sale or other event, spreading knowledge of NNCCF is a great way to contribute to the NNCCF cause. “Word of mouth” is always effective, but using email and social networking sites are also ways to let the world know about NNCCF. Liking the NNCCF Facebook page and sharing information from the page are just a few examples of how to promote awareness. Liking pages for related organizations like St. Baldrick’s is also helpful!
These are just a few ways to get involved with NNCCF. If you have any other ideas for how you or someone else can help NNCCF, please let us know!
By Natalie Van Hoozer
As a college freshman, everyone asks me what my plans are for the summer and the coming school year. I am happy to tell them that a large portion of my time spent outside of the classroom will be spent volunteering with NNCCF.
When I first started volunteering at NNCCF, I was a senior in high school looking for somewhere to intern for a school class. Once I visited NNCCF, I knew it was the place for me. I received the “tour” around the office and got to meet all of the lovely staff.
After that welcoming experience, I was put to work preparing for the 2013 Tournament of Hope. I had the opportunity to meet even more kind, generous, and ambitious people through this experience. As a volunteer, I have found that you don’t just sit behind a table and perform one task most of the time at NNCCF; at events you have the opportunity to really interact with the other volunteers and event participants.
Since that time, Poker Tournaments, Radiothons, and other events have come and gone, each event being efficiently organized and run. All of them have been learning opportunities for me, as everyone, staff and otherwise, is always extremely helpful and happy to answer all of my questions.
Most importantly, my own knowledge of childhood cancer has increased, which has helped me become an advocate for the many worthy causes related to it. I now let people know about NNCCF events and fundraisers, direct them to the website, and tell them about the importance of cancer research and clinical trials. My only hope is that people take my information to heart and learn to spread the word about childhood cancer.
The most recent event I volunteered for was the 2015 St. Baldrick’s “Brave the Shave” event. For me, it was the best opportunity I have had to see the community of the Northern Nevada area come together and stand in solidarity with those who have childhood and other cancers. The fact that almost $200,000 dollars was raised just made the experience even better. As a volunteer, one of the aspects I love about the event the most is getting to see people, familiar and new alike, come together despite differences to make a positive impact in the world. My opinions about NNCCF and nonprofit organizations have only been reinforced since this event a few weeks ago. I am still encouraged that one day I will be able to work for a nonprofit organization like NNCCF full time and help to make the difference that I see people at NNCCF making every day.
Treatment Update: T-cell Therapy
By: Natalie Van Hoozer
T-cell therapy is an up and coming cancer treatment process. Some of our own northern Nevada kids have received or are currently receiving this treatment. T-cell therapy, also called “immunotherapy”, utilizes the existing immune cells in a person’s body to kill cancer cells.
T-cell therapy has been used in clinical trials for patients with B-cell cancers. These include acute lymphoblastic leukemia (ALL), B-cell non-Hodgkin lymphoma (NHL), and the adult cancer chronic lymphocytic leukemia (CLL).
As the Children’s Hospital of Philadelphia states, the T-cell therapy clinical trial produced some noticeable figures:
– 27 of the 30 patients with ALL went into complete remission for a time after receiving this T-cell therapy.
– 19 of the 30 are still in remission.
– 7 of the 30 experienced a recurrence of the disease.
Here is how the T-cell therapy process works:
Initially, people with certain leukemias and lymphomas, like ALL, NHL, and CLL, have cancerous B-cells. These cells are part of the immune system and therefore are not detected as harmful by the other cells of the immune system, even when they become cancerous. T-cell therapy attempts to solve this problem by altering T-cells, which are also part of the immune system, to detect these cancerous B-cells.
This alteration requires extraction of T-cells from the patient. These T-cells are then programmed to detect a certain protein that is only present on the surface of B-cells. Once, “programmed,” these T-cells are placed back into the patient, where they kill B-cells, cancerous and noncancerous alike. The fact that they kill healthy B-cells is treatable. The important thing to note about this step is that these T-cells are able to continue to flourish inside the patient and even multiply, allowing them to kill B-cells for extended periods of time.
Why T-cell therapy matters:
– It’s personalized. A patient’s own T-cells are used to go after that patient’s specific type of cancer.
– It could potentially be a less invasive alternative to stem cell transplants, which are currently the major treatment for people with ALL. While stem cell transplants are effective for many patients, they can be dangerous and taxing to undergo.
Currently a main side effect of T-cell therapy is cytokine release syndrome, an immune response that can cause the hormone cytokine to trigger fever, aches, drops in blood pressure, and breathing trouble. However, this is currently being combated by immunomodulating drugs, which are now being incorporated into T-cell therapy.
It is also important to note that T-cell therapy is for patients who have not responded to standard chemotherapy and whose disease returns after a bone marrow transplant. What’s more, the number of patients who have received this treatment is small, so further trials will need to be conducted to obtain more concrete results.
However, with the Breakthrough Therapy award from the U.S. Food and Drug Administration in July of 2014, this treatment provides hope for the future. Hopefully, T-cell therapy can help in the fight against cancers like ALL.
By: Natalie Van Hoozer
The Northern Nevada Children’s Cancer Foundation, a local nonprofit dedicated to fighting childhood cancer, is hosting “Brave the Shave” events in 2015 to benefit the St. Baldrick’s Foundation. But what is the St. Baldrick’s Foundation and what is “Brave the Shave?”
St. Baldrick’s is a nonprofit organization dedicated to raising money to fund pediatric cancer research. Specifically, they fund clinical cancer treatment trials, collaboration between cancer researchers, education and training for more pediatric oncologists, and supportive care research (which deals with side effects of cancer treatment, psychosocial impacts of cancer treatment, and much more).
In conjunction with this nation-wide organization, NNCCF is hosting two “Brave the Shave” events in the Northern Nevada area.
NNCCF’s “Brave the Shave” is a hair-shaving fundraiser whose proceeds go towards St. Baldrick’s pediatric cancer research efforts. NNCCF has raised more than $1.2 million and shaved more than 1,800 heads at these “Brave the Shave” events. Those who shave their heads at this event, called “shavees,” raise money, get pledges from community members, and stand in solidarity with children fighting cancer, many of whom lose their hair as a result of their cancer treatment.
The first “Brave the Shave” is taking place at the South Lake Tahoe Ice Arena on February 27, 2015, 6:30-9:00 PM. The second event is happening at the Reno Livestock Center Exhibit Hall on March 20, 2015, 6:00-9:00 PM. People who attend the event can be shavees, volunteers, or come to watch and give support.
Donating to St. Baldrick’s is possible here.
More information about NNCCF’s involvement with St. Baldrick’s and the upcoming events is available here.
As the Northern Nevada Children’s Cancer Foundation prepares to attend the 2014 Childhood Cancer Action Days on Capitol Hill, we look back at how far we have come in just a year. With the help of a generous donation to NNCCF, we are proud to announce that we are expanding our program to include support for adolescents diagnosed with childhood cancer before their 21st birthday and through treatment until their 23rd birthday, a group often referred to as Adolescents and Young Adults (AYA). Being able to serve this age group helps to align NNCCF with other national organizations, brings NNCCF to a whole new level of care and allows help to extend to a greater number of people. Previously NNCCF was only able to help those diagnosed before their 18th birthday.
In addition to the program expansion, Nevada has passed the Oral Chemotherapy Parity Law. NNCCF is relieved to see the shift in legislation now allowing families to receive oral chemotherapy without the burden of extremely high co-pays. According to the International Myeloma Foundation, traditionally, IV chemotherapy treatments are covered under a health plan’s medical benefit where the patient is required to pay an office visit copay, usually between $20 and $30. Conversely, oral anticancer medications are covered under a health plan’s prescription benefit and, many times, patients are responsible for extremely high and unmanageable copays, creating an enormous barrier for patients to access orally administered drugs. According to a recent study published in the Journal of Oncology Practice and American Journal of Managed Care, 10% of cancer patients failed to fill their initial prescriptions for oral anticancer medications due to high out-of-pocket costs.
In an effort to remove barriers to accessing life-saving treatments for cancer patients, Nevada implemented legislation for health policies issued or renewed on or after January 1, 2015. This law requires health policies that provide coverage for the treatment of cancer through chemotherapy must not require a co-payment, co-insurance or deductible of more than $100 per prescription for orally administered anticancer treatment. Additionally, plans may not increase the out-of-pocket cost to patients to achieve compliance.
What Does This Mean for Patients?
If a patient is privately insured (the law does not apply to Medicare or Medicare supplemental plans), and their plan covers chemotherapy, an FDA-approved, orally administered drug should have a maximum of $100 co-payment per prescription.
Along with all of these positive changes, the Nevada Cancer Coalition is currently in the process of re-writing the strategic plan for the state. Moving forward, NNCCF will have a voice in this plan and the NNCCF team is excited to see what Childhood Cancer Action Days will bring at the end of June.