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Pediatric Brain Tumor Foundation Of The United States Inc

Rating: 3.5 stars   4 reviews 1,050

Address:

302 Ridgefield Court Asheville NC 28806 USA

Mission:

The pediatric brain tumor foundation is a 501(c)(3) nonprofit charitable organization that seeks to find the cause of and cure for childhood brain tumors by supporting medical research, increase public awareness about the severity and prevalence of childhood brain tumors, aid in the early detection and treatment of childhood brain tumors, support a national database on all primary brain tumors, and provide educational and emotional support for children and families affected by this life-threatening disease.

Programs:

In 2014, the pediatric brain tumor foundation:- paid $1. 8 in research and related grants - served 6,190 family support program clients- awarded 100 college scholarships - held one radio-thon that reached more than 130,000 listeners - participated in patient advocacy efforts at the federal level with the alliance for childhood cancer - held 37 ride for kids program events around the country, attended by over 9,000 ride participants and volunteers. - had 328,746 page views to our websites, www. Curethekids. Org and www. Rideforkids. Org - mailed 66,677 national newsletters and annual reports - sent 858,377 informational emails about our activities, programs and events. - provided funding to the central brain tumor registry of the united states, the brain tumor epidemiology consortium, and the scientific journal neuro-oncology- provided direct financial aid to families through our georgia chapter office - 175 families with $204k through 21 hospitals in 9 states. During the second year of our 2013-16 strategic plan, we made critical investments of financial and human capital to achieve six key objectives, including growing existing fundraising programs and creating new revenue sources to fund more research. We also intentionally invested in creating a network of local chapters to reach and serve more families affected by childhood brain tumors. To diversify revenue, we launched a new signature fundraising event, the starry night 8. 5k walk/run; established new corporate partnerships; created an annual and major giving program to increase non-event revenue; and introduced low-cost, efficient online fundraising pages for community members and endurance athletes. The ride for kids program worked with motorcycle industry experts to increase new and return participation; cross-promoted with the starry night program and added components to increase non-motorcycle participation. Our research investment strategy included establishing a framework for prioritizing funding; creating a research advisory network to provide highly informed perspectives on the biomedical research enterprise; and broadening the scope of our research funding and expertise. We began to expand our family support program offerings, including hosting our first educational conference for survivors and parents. On the organizational side, we recruited new board members from the legal, financial services, insurance marketing and hospitality industries; increased board involvement in fundraising and established chapter offices in georgia and illinois. In 2014 we created an integrated marketing and communications plan; established stronger brand identity by developing branded websites, fundraising events and educational literature; and expanded communications resources to support new programs and initiatives such as chapters and online fundraising. We increased our use of social media to communicate mission-driven stories and we developed new and updated educational resources for families.

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More Info

(828) 665-6891
www.pbtfus.org

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Reviews for Pediatric Brain Tumor Foundation Of The United States Inc

Role: Professional with expertise in this field
Rating: 5 stars  

2 people found this review helpful

I'd like to reply to a prior review (1 star) of the PBTFUS. As a survivor of a pediatric brain tumor and cancer, in addition to knowing the Traynor family personally, I can honestly say that this person does not know what he is talking about. The PBTFUS is the world’s largest non-governmental source of funding for childhood brain tumor research! I'd like to BOLD and UNDERLINE that last statement. And as for the Traynor family, specifically the founders Mike and Dianne Traynor, they dedicated their entire lives to the children and families affected by pediatric brain tumors. Both Mike (2009) and Dianne (2012) have passed away but they left behind an amazing organization that continues their work (helping children and families affected by pediatric brain tumors). And if people actually looked at the breakdown of how funds are distributed they would have noticed that in 2010 83.5% went towards programs, 9.6% towards management and administration, and 6.9% towards fundraising. I'd say that an organization that has less than 10% going towards the management and administration of organization that does as much as the PBTF does and has done is pretty impressive. The PBTFUS has also never discouraged donating to other organizations that work to help children affected by pediatric brain tumors and cancer. So before you decide to rate an organization based on incorrect information do your homework - take a look at Charity Navigator's rating of the organization and take a look at the organizations website - you might find out that organizations like the PBTFUS are truly amazing and inspirational.

How does this organization compare with others in the same sector?

Very Well

How much of an impact do you think this organization has?

Life-changing

Will you recommend this organization to others?

Definitely

When was your last experience with this nonprofit?

2012

 
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Role: General Member of the Public
Rating: 1 stars  

I personally believe the Traynor families salaries are too high to be charitable and too tightly controlled. Their are much better charities out there for research! Donate directly to the researchers at Dana Farber, St. Judes, Johns Hopkins etc! Brain Tumor Parent

Will you volunteer or donate to this organization?

No

How much of an impact do you think this organization has?

Some

When was your last experience with this nonprofit?

2012

 
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Rating: 4 stars  

A fellow biker friend introduced me to the PBTFUS "Ride for Kids" in 2000, where I began by participating in the Baltimore-Washington Ride, one of now 40 around the country each year. I became very interested after attending the funeral of the 9 year old daughter of good friends of ours who died of a brain tumor. For 2001, I began to ask for donations for the Ride, and worked at this even harder each year as I learned more about the work of the Foundation.
In 2005, we moved to Charlotte, NC and I switched to taking part in the Asheville, NC ride each August. My wife and I vacationed in Asheville, and we took that opportunity to visit the headquarters of the PBTFUS while we were there and got to know Mike and Dianne Traynor personally.
I did learn that Dianne relentlessly reviews every research grant proposal in detail, and the PBTFUS requires that researchers share any knowledge gained with others. One result is the development of chemotherapy regimens that do NOT damage the growing brains of children as did adult drugs before the Foundation got involved.
There was some criticism of the fact that the Traynors brought their son Bryan into the "fold" as a paid employee. In hindsight, that was a superb decision. Mike died very suddenly and unexpectedly a few years ago and Bryan was able to jump right in and take over the work of his father.
At our visit to the PBTFUS, we could see for ourselves that there are VERY few (& very hard-working) paid employees of the Foundation. This works because the PBTFUS relies on a virtual army of volunteers and corporate sponsors that donate coffee, box lunches, etc. for each and every Ride.
This certainly motivated me, and I personally volunteer to deliver information/registration brochures for the Asheville Ride to all the motorcycle dealers in Charlotte and Gastonia, NC. As a professional photographer, I also take portraits of the Ride "Stars" (kids under treatment & in remission) with their families before the Ride, and of the "Celebration of Life" get-together at the end, and give all the images to the Foundation.

I've personally experienced the results of this organization in...

learning first-hand from the kids that the Foundation has helped what it has done for them. I have become good friends with one "Star" who attributes her life to the work of the PBTFUS. They helped her with college and she now has a job and a boyfriend, and volunteers in helping the organization.

If I had to make changes to this organization, I would...

I really cannot think of anything right now.

 
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Review from CharityNavigator
Rating: 4 stars  

I've been raising funds for the PBTFUS for over ten years. I've been impressed with their organization since my first encounter. Their financial transparency is more than adequate and the cause is one of great importance.

Through their efforts over the last 2 decades the life expectancy for a child with a brain tumor has increased significantly. Before the PBTFUS started funding research a brain tumor was essentially a death sentence for a child. Now there is hope with many of them going into remission and going on with a normal life. I have met several of these children and they are truly inspirational.

As long as I'm able to raise money, continue working in my own business, and ride I'll be showing up at the Baltimore/Washington annual ride -rain or shine.

See you 25 September 2011,

Jimmy Tragle DVM

I've personally experienced the results of this organization in...

meeting several of the children (as well as their parents) that the PBTFUS has had a positive effect upon.

If I had to make changes to this organization, I would...

try to increase the general public's awareness of them.

Was your donation impactful?

Definitely

How likely is it that you would recommend that a friend donate to this group?

Definitely

How likely are you to donate to this group again?

Definitely

What specific problem, purpose, priority, or project prompted your gift?

I learned of them by chance while attending a motorcycle rally in Asheville, TN several years ago.

Why did you make your donation at this time?

I'm hooked. I've only missed one or two of the annual rides since I became aware of this fine organization.

What would you tell others about this organization?

It is a worthy cause and if you have children consider donating so someone else's child or your own may one day benefti from their good work. Heck, I don't even have any kids, but many of my siblings, friends, and clients do!

When was your last experience with this nonprofit?

2010

 
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