DonateGames Turns Used Video-Games into Funding for Medical Research to Help Kids

By Michael Lafferty

“There is so much goodness coming with what we are doing”

Nothing touches the heart so much as children in need. Jim Carol knows that agony personally. In 2007 his 11-year-old son was diagnosed with Philadelphia Chromosome, a rare form of leukemia. The Carol family did what any family would do – they moved their family from California to Seattle and to a place where their son, Taylor, could get the best care, beginning with a bone marrow transplant.

As Jim wrote on the DonateGames Web site: “We ended up living in Seattle Children’s Hospital for almost a year during his chemotherapy. Taylor and the other kids at the hospital were terribly sick, scared and isolated, but video-games played a big part in helping them get better.”

It was from that experience that the idea for DonateGames was born. The idea is a simple one – games donated to the organization are resold and the proceeds are fed back to fund research. Here’s how it all works (as stated on the web site):

“By donating a game, you can receive credit on your taxes equal to or greater than the value you would have received by trading it in and know that your game went to help a good cause. By buying a game from Donate Games, you can get a game at a good price and know that your money will go to help a good cause, too.”

Operating with a volunteer staff, the proceeds from every sale “will go to support those suffering from orphan diseases around the world, searching for cures, providing caring networks and easing suffering.”

Video-game publishers like EA, Paradox Interactive, Telltale Games, Valve and NCsoft are partnered to the program as are other entities, such as public relations firms. There are more than 240 titles listed in the Web site’s store and more titles are ready to be scanned into the store’s inventory.

It keeps the Carol family hopping, but Jim took time to chat about the way the charity started and where he sees it going…

“When we were up there (in Seattle) is when I really saw how important video-games are to kids when they are isolated and sick,” he said. ”Being around and seeing when kids are isolated and stuck in a hospital for months on end – especially when they are having immune system challenges from their cancer treatment, they can’t hang out with anybody, they can’t do anything and video-games mean so much to the kids when they are in the hospital. I think that was the first thing.

“The second thing that happened was I found the video-game Re-mission. It turns out I had old friends that were working there and that’s a charity that is using video-game technology to help children who have cancer. They found that it helps with the chemo uptake, and so we became good friends with the people over at HopeLab, who make Re-mission and again, just fortifying how good video-games really are. And then the way the whole thing came together, Taylor had radiation (therapy) and couldn’t be around anybody and we had to live in a Ronald McDonald house because they have special buildings up there for kids who have no immune system. And when we were at the Ronald McDonald house it was startling to me how hard it is for most families, especially if the child has a rare and neglected disease. We all know about breast cancer, colon cancer and leukemia, but about 20 million Americans end up suffering from these rare and neglected diseases where you don’t have support groups. When we were living at the Ronald McDonald house, we weren’t looking at the menu anymore, we were eating the meal. We saw how hard it was on most families and how most families are just fighting for their kids’ lives.

“And it was a rainy, sad day in Seattle, which many are during the winter, very depressing and I was sitting in my car when a bus pulled up next to me with a huge donate-your-car sticker on the side of the bus. And that was the moment when I thought we can’t let that happen with video-games, we can’t let it become fractured and disjointed. We need to create a charity that is going to be trusted, that’s going to have a lot of discipline, that’s going to make sure that all of the money from the sale of used video-games goes to help sick kids.”

Too often people complain about video-games and point at them as though they were behind the ills of the world. Jim has an entirely different perspective.

“I’m part of that generation that created that stigma,” Jim said. “I’m a 50-year-old pop and I wasn’t a gamer. But I do believe in video-games, I don’t think they are bad, I think they are wonderful for education. My contemporaries jump to conclusions right away and think they (video-games) caused Columbine, and that’s just not the case. You will see, this year, a big part of what I’m going to be talking about in the media is that we need to change that opinion. Video-games are good and gamers are good, and they are benevolent, and they are kind and they are giving, caring people. And to be honest, 94% of the kids play video-games now so it won’t be an issue, probably, in 10 more years. But right now I think the general perception of a lot of people is incorrect.”

Jim cited the game Re-mission, which was financed by eBay founders Pierre and Pam Omidyar, that was proven to improve recovery time and scientifically proved to have positive results. Taylor, Jim’s son, was actually a spokesperson at the TED Conference where scientific facts were presented to support the findings that playing video-games – like Re-mission – was of value.

“You can affect your outcome with your mind,” said Jim. “If you can see the chemotherapy as your friend, not as your enemy and if you can embrace it, and if you can use your brain it is only going to help you get better.”

Taylor is doing well. He has to be tested all the time, but he is doing his part. He has been on the cover of the Make-a-Wish magazine, and he continues to speak about the charity. In fact he has spoken on behalf of 12 different charities.

“There is so much goodness coming with what we are doing,” Jim said. “I was the CEO of a global software company, I’ve run big companies, I retired young and I’ve never been around anything like this. I’ve never had people so willing to help, so kind and generous – it’s humbling. I have to tell you, this is the best thing I’ve ever done in my life and I’m just humbled. As long as we stay pure at this charity and make sure all the money goes to help the kids and help fight disease, this is going to be the next Make-a-Wish.

“The kids – the 17 to 33-year olds – all these charities that are out there, a lot of them are from their grandfather’s generation. Most of the big iconic charities were started after World War II – the Red Cross, the American Cancer Society. It’s time for a new charity to pop up for this new generation to get involved with that they can feel is their own. And I’m praying that we can start this, get all the infrastructure built up and that this is a charity … we are not saying ‘give us your money.’ We are saying ‘let’s recycle these idle used video-games.’ You are not buying from us, you are buying a game from a gamer.”

Donations are coming in from a lot of different sources. The Academy of Interactive Arts and Sciences has made a donation. A donation to the charity came in from the embassy in Kabul, Afghanistan and another from Dubai.

“I think if we just continue to keep our eye on the prize,” Jim said, “to communicate what we really stand for and to create a brand that people know can be trusted that almost every single penny that is raised is going to go to help sick kids, their families or to help find a cure for a rare disease. If we do that, we’re going to be Ok.”

Link to Article

Black Francis, “Weird Al,” Flea to Rock “Winston Calling” Benefit

The Pixies might have just kicked off the American leg of their Doolittle tour last night in Los Angeles, but Black Francis has already made plans to return to L.A. on December 8th and 9th when he headlines Winston Calling: A Rock and Comedy benefit concert for baby Winston Bertran. The first concert of the two-night benefit at the Echoplex and its upstairs venue the Echo will also feature appearances by “Weird Al” Yankovic (who will sing the Pixies’ “I Bleed”), Flea, Michael Penn plus members of Pixies, Love & Rockets and She Wants Revenge. Francis’ Grand Duchy side project with his wife Violet Clark will also perform. The second night will feature comedy from Tim & Eric, Bob Odenkirk, Pixies’ David Lovering and another solo performance by Francis.

Both shows will raise money for Winston’s Village, a charity started by the family of Winston Bertrand, a eight-and-a-half-month-old baby born with two rare complex malformations called Lymphatic and Venous Malformations. According to the Winston’s Village Website, the first condition “deals with a lack of fitness of the lymphatic system and chronic pooling of lymph fluid, creating large cysts in the face and neck. The second concerns the improper formation of veins.” Winston’s condition requires around-the-clock care, so his parents are hoping to raise the appropriate funds.

Tickets for the shows are available at the Echoplex website. For more information and to donate for Bertrand, visit the Winston’s Village Website.   http://winstonsvillage.bbnow.org/about.php

Daniel Kreps
Rolling Stone – Rock and Roll Daily

Children’s Rare Disease Network Receives Life Technologies Foundation Grant

Grant to fund PBS television series to focus on technology innovation and its impact on diagnosing disease in children.

Dana Point, Calif. – November 23, 2009- The Life Technologies Foundation has awarded The Children’s Rare Disease Network a $50,000 grant the nonprofit organization announced today.

The funding will be used to increase the Network’s public education resources and help spread the word to parents of children with rare diseases and the general public about how DNA mapping is propelling forward advances in medicine to find cures for rare pediatric disease.

As part of this public education campaign, PBS’ To the Contrary with Bonnie Erbé will air a series of three documentary-style field pieces on this technologically ground-breaking work and show how families are benefiting from genetic mapping research that uses DNA as a diagnostic tool.” “We view this grant as a huge win for the rare disease community as a whole”, stated Nicole Boice, Children’s Rare Disease Network Founder and President. “We are grateful to Life Technologies Foundation for their support and help in building greater awareness about rare disease and the impact on our families.”

All of this work is critically important for families of children affected by rare disease, because the technology is becoming a tool that provides new hope and prognosis when time is critical. With 25 – 30 million people afflicted with a rare disease in the United States and approximately 100 million people directly impacted, rare disease is becoming recognized as one of the most debilitating and deadly disease categories facing our families today. Understanding the impact on our community, and more specifically our children, The Children’s Rare Disease Network in collaboration with hundreds of disease specific and rare disease umbrella organizations are working to educate the greater public about the prevalence of rare disease.

Additionally, recognizing the need for greater understanding, education, and awareness about rare disease has become a catalyst for the Children’s Rare Disease Network and its mission.

“Most people are unaware of the millions of people whose lives have been upended by these rare diseases,” says Nicole Boice, “We need to change this by developing greater public awareness, by creating programs to increase community involvement and build corporate commitment and support. These types of efforts will become a catalyst for more resources and more funding directed to help these families. The grant from the Life Technologies Foundation and the PBS series developed by Bonnie Erbe is an important first step for our organization.”

Americans are currently living during a transformative time in medicine. With the advent of personalized therapies and the development of innovative technologies, Americans have more opportunities to help diagnose rare diseases and develop effective treatments within their children’s lifetime. There is a lot of work that needs to be done, but with the efforts of patient advocacy organizations, biotech and pharmaceutical companies, the industry is moving in the right direction.

The Children’s Rare Disease Network
The Children’s Rare Disease Network is a division of The R.A.R.E. Project, which exists to promote Rare disease Advocacy, Research, and Education. It is a 501(c)(3) corporation. The organization is committed to improving, extending and saving the lives of millions of people living with a rare disease or disorder. Through its comprehensive web community and collaborative efforts, The Children’s Rare Disease Network will empower patients, their families, patient advocates, and caregivers to make a difference in the lives of these children, their therapy and treatments. www.rareproject.org

Rare Disease Research Conference at NIH in Jan. 2010, registration is close to full, act fast.

Uniting Rare Diseases, Advancing Rare Disease Research: The Intersection of Patient Registries, Biospecimen Repositories and Clinical Data.

NIH/ORDR Workshop in Bethesda, Maryland on January 11-12, 2010.  Over 200 people are registered and registration will close at 250 people.

:: Catherine Calhoun

Kerry Legislation Provides Medical Coverage to Children with Rare Health Disorder

Senator John Kerry (D-Mass.), a senior member of the Finance Committee, today introduced legislation to provide health insurance coverage for children with rare metabolism disorders. The Medical Foods Equity Act of 2009 will require medically necessary food and supplements to be covered by both federal health programs and private insurance plans.  Each year, an estimated 2,550 children in the United States are born with rare metabolic disorders caused by a defect in a single gene.  Effective treatment of these disorders requires special foods and supplements that lack the nutrients these children’s bodies reject. “These special foods and supplements are the medicine these kids need to lead healthy lives, and insurance companies need to respect that,” said Kerry. “These kids shouldn’t suffer because the financial burden is too great for their families.  This legislation provides an affordable means for getting these children what they need to be well.”

The Medical Foods Equity Act:

• provides coverage for medically necessary foods and supplements in federal health programs (Medicare, Medicaid, CHIP, and TRICARE) and the private health insurance market (fully insured group health plans, self-insured group health plans, and non-group health plans);

• requires the Secretary of Health and Human Services to make a determination of minimum coverage levels for medically necessary foods and supplements for certain rare metabolic conditions

∙ defines “medically necessary food” under the Food and Drug Administration’s classification as food “which is intended for the specific dietary management of a disease or condition for which distinctive nutritional requirements, based on recognized scientific principles, are established by medical evaluation.”

The Medical Foods Equity Act is endorsed by more than forty health organizations including American College of Medical Genetics, the Children’s Rare Disease Network, and Genetic Alliance.

Jill Levy-Fisch
President
Save Babies Through Screening Foundation www.savebabies.org Jill@savebabies.org
914 588 1127. Ph

Rare finds and reminders this week from a parent advocate.

Clearing my inbox, several worthwhile finds this week, including:

(1) From Genetic Engineering and Biotechnology News, an article by Taralyn Tan reminding everyone of the importance and value in funding the little guys of research, the little guys of rare disease.  See blog post here.

(2) Just when I was about to scratch “gene therapy” off the coming soon list for my son’s disease, the New York Times covered recent small successes in gene therapy.  See article here.

(3) Don’t keep your thoughts on health to yourself, comments for Healthy People 2020 are open until the end of December 2009.  Speak up, soon, link here.

(4) How do you get your health information?  Let NIH know.  Individuals and organizations are encouraged to participate in this information share, this RFI closes at the end of December 2009.  Again, speak up soon, link here.

(5) From Genetic Alliance, Ad Hoc Group for Medical Research: A letter thanking the administration for the NIH funds in the American Recovery and Reinvestment Act (urges NIH be a significant priority in the FY 2011 budget). To sign on to the letter, please contact Hayzell Gollopp at hgollopp@aamc.org by NOON on Friday, Nov. 20.  Please circulate this letter to other organizations that may be interested in signing.

[Text of the Letter]

November XX, 2009

The President

The White House

Washington, DC 20500

Dear Mr. President:

The undersigned XXX patient groups, scientific and medical societies, research institutions, and industry organizations sincerely thank you for your commitment to “restore science to its rightful place” and for the historic short-term support for the National Institutes of Health (NIH) demonstrated through the American Recovery and Reinvestment Act (ARRA). Our organizations strongly supported that bill because, as you and your administration consistently champion, the future of this nation’s health and economy depends on bold, sustained investment in research.

We write today to urge you to maintain the remarkable scientific and economic momentum ARRA is generating by making NIH a continued high priority in Fiscal Year 2011. We ask you to make permanent NIH’s promising new capacity, avoiding a steep drop-off in its scientific potential and its proven ability to serve as job generator and key component of the R&D platform for the nation’s biomedical and high-tech economies.  Robust, sustained funding will ensure NIH-supported scientists can aggressively pursue solutions to the most challenging threats to our health. From cancer to Alzheimer’s disease, autism to heart disease, depression to diabetes, HIV/AIDS to blindness, hope for millions of Americans depends on progress made through research, and promising, high-quality ARRA-funded research is now underway on these health conditions, as well as many more.  The knowledge generated by research is also fundamental to transforming U.S. health care from a “sick-care” system to a system focused on preventing disease and promoting wellness.  Indeed, we can say unequivocally that historic strong medical research investments have created the proven pathway to improved health, better quality of life, and expanded earnings potential for millions of Americans.  Faster progress on preventing, delaying and treating illness is more important than ever as Americans age and become more diverse.

Finally, when NIH invests in discovery, it spurs economic growth. NIH Director Francis Collins recently stated that ARRA grants will create or retain 50,000 jobs in communities nationwide over the two-year period. This is in addition to the impact on supporting businesses that thrive when the biomedical sector grows.  Moreover, NIH dollars promote global economic competitiveness – they serve as a powerful catalyst for additional public and private research investment and jobs, and this nation’s commitment to basic science has made America the world leader in medical and scientific discovery.  Finally, local and state economies nationwide benefit from NIH investments. Eighty-five percent of the NIH budget is invested in U.S. communities through universities, medical schools, hospitals, research institutes, and innovative small businesses in every state.

The large and diverse research and patient communities, representing millions of individuals, stand united in support of strong NIH funding in FY 2011. With continued gratitude and support, we ask you to invest in NIH, thereby ensuring America capitalizes on the historic opportunity generated by ARRA.  NIH funded research gives patients hope, and directly serves the long-term health and economic needs of the nation.

Sincerely,

[undersigned organizations]

:: Please make your voice heard.  Regards, Catherine Calhoun.

PATIENTS EMBRACE VIRTUAL BIOTECHS TO DEVELOP DRUGS FOR THEIR CONDITIONS

As a business model, the notion of the virtual biotech by some estimates has been around for as long as 25 years. But for people afflicted with a rare disease and their families, the notion of the virtual biotech is generating energy and enthusiasm around raising funding to create ad hoc teams to conduct specific drug development projects. We spoke to Jonathan Jacoby, CEO of the RARE Project, about what it takes to create a virtual biotech, what successes there have been to date, and how this reflects a broader change in the role of patients and their families in drug development.

http://www.crdnetwork.org/news/podcasts/virtualbiotechs.html