(left) D TOUR director Jim Granato and (right) June R. Wallace, Community Affairs Coordinator, California Transplant Donor Network at the Oakland Asian Cultural Center

Throughout the month of September 2009, Community Cinema presented free preview screenings of the documentary D TOUR. Each of the 36 events between September 1 and September 29 connected audience members with information about local organ donation registries and shared the stories of transplant recipients and the donors who saved their lives. The emotionally moving film follows indie rock drummer Pat Spurgeon on a “dialysis tour” as he waits for a kidney transplant match and tours with his band, Rogue Wave.  The film lead to many deeply personal and heartfelt discussions with speakers afterward. Even if you missed one of our events, you can still easily connect with the local donor registry in your area.

And, you should.  The need is dire.  Every 13 minutes another person is added to the national organ transplant waiting list. One in nine American adults— more than 20 million –have kidney disease, and most don’t know it.  Nationally,  about 106,000 people are awaiting transplants of all kinds. In the Puget Sound region around Seattle there are over 1600 people waiting. In the DC area alone, there are nearly 2,000 people waiting desperately for an organ to save or enhance their lives.  More than 3,400 individuals live in the New England region waiting for a life-saving organ transplant.  20,000 people on the wait list live in California.

Every D TOUR event gave audience members a chance to hear the local stories of transplant recipients, donors, doctors, nurses, and/or those living their lives while waiting for a life-saving organ transplant.

Washington DCJCC screening 9/13/09 – left to right Ellen Weiser (kidney recipient), Elaine Weiss (liver recipient), Jean Cook (Future of Music Coalition), John Odgen (WRTC), Ellen Blaock (donor parent)

Regional organ donor registries we worked with included Gift of Hope Organ & Tissue Donor Network (Chicago), The California Transplant Donor Network (N. CA and Nevada), the National Kidney Foundation of Middle Tennessee (Nashville area), New England Organ Bank, Washington Regional Transplant Community (DC area), Louisiana Organ and Tissue Donor Registry, Life Alliance Organ Recovery Agency (Miami), Gift of Life Donor Program (Eastern PA, southern NJ, and Delaware), and Donate Life Today (WA and Montana). Each of these organizations can give you information about donating in your community. They also offer resources for transplant recipients and patients waiting for a transplant.

Through the Kidney Early Evaluation Program (KEEP^®) the National Kidney Foundation of Middle Tennessee in the Nashville area 226 people at risk for kidney disease were given free screening tests last year. The National Kidney Foundation’s nationwide KEEP offers free screening for those at risk – anyone 18 years and older with high blood pressure, diabetes or a family history of kidney disease.  KEEP provides three simple tests that determine kidney function to thousands of people each month in dozens of cities across the U.S.  Pat Spurgeon’s story in D TOUR highlights the need to regularly monitor kidney health for those who are in at-risk categories.

In St. Louis we met husband-and-wife speakers, Keya and Darion. Keya was surprised to find herself a perfect donor match for her husband, Darion. “The decision to be a donor was very easy because I wanted my husband alive and healthy and to live a long life with me. The film reminded me of the importance of what I did as a donor.” For husband Darion, “The film triggered feelings I had forgotten. The film was like looking in a mirror. At 23 when I needed a kidney I felt invincible but this film makes you aware that kidney failure can happen to you or someone you know at anytime.”

Based on observations at our events and talking to our partner organizations afterward, we estimate that at least 50 people signed up to become organ donors with their local registry (including one of our own regional event producers and two ITVS staff members) at D TOUR events.  Up to 50 lives can be saved or made better by each donor, which means that about 2500 people could potentially benefit from connections made at D TOUR events in September. June R. Wallace, Community Affairs Coordinator, for California Transplant  Donor Network said after the D TOUR event she attended in Oakland,”The filmmaker captured the experience of just what a recipient, their families,  and their friends go through while waiting. The emotional rollercoaster of waiting for an organ is devastating.  My volunteers were so impressed to see both sides of  the process, and it gave them more encouragement to continue this great work they do.”

Watch the exclusive video below with Independent Lens host Maggie Gyllenhaal who discusses D TOUR, which chronicles musician Pat Spurgeon’s search for a living kidney donor and the challenges associated with finding a viable match. The program will air on November 10 at 10:00 PM on Independent Lens on PBS (check local listings).

Spurgeon’s story highlights the need to regularly monitor kidney health for those who are in at-risk categories. Throughout the month of September, Community Cinema presented 36 free screenings of D TOUR with local organ donor registries and support groups. Based on observations at our events and talking to our partner organizations afterward, we estimate that at least 50 people signed up to become organ donors with their local registry (including one of our own regional event producers and two ITVS staff members) at D TOUR events. Up to 50 lives can be saved or made better by each donor, which means that about 2500 people could potentially benefit from connections made at D TOUR events in September.

Learn more about kidney disease, organ donation and the film >>

(left) D TOUR director Jim Granato and (right) June R. Wallace, Community Affairs Coordinator, California Transplant Donor Network at the Oakland Asian Cultural Center

Throughout the month of September, Community Cinema presented free preview screenings of the documentary D TOUR. Each of the 36 events between September 1 and September 29 connected audience members with information about local organ donation registries and shared the stories of transplant recipients and the donors who saved their lives. The emotionally moving film follows indie rock drummer Pat Spurgeon on a “dialysis tour” as he waits for a kidney transplant match and tours with his band, Rogue Wave.  The film lead to many deeply personal and heartfelt discussions with speakers afterward. When D TOUR airs nationally on PBS on the Emmy Award winning series Independent Lens on November 10, 2009 (check local listings) you can still easily connect with the local donor registry in your area.

And, you should.  The need is dire.  Every 13 minutes another person is added to the national organ transplant waiting list. One in nine American adults— more than 20 million –have kidney disease, and most don’t know it.  Nationally,  about 106,000 people are awaiting transplants of all kinds. In the Puget Sound region around Seattle there are over 1600 people waiting. In the DC area alone, there are nearly 2,000 people waiting desperately for an organ to save or enhance their lives.  More than 3,400 individuals live in the New England region waiting for a life-saving organ transplant.  20,000 people on the wait list live in California.

Every D TOUR event gave audience members a chance to hear the local stories of transplant recipients, donors, doctors, nurses, and/or those living their lives while waiting for a life-saving organ transplant.

Washington DCJCC screening 9/13/09 – left to right Ellen Weiser (kidney recipient), Elaine Weiss (liver recipient), Jean Cook (Future of Music Coalition), John Odgen (WRTC), Ellen Blaock (donor parent)

Regional organ donor registries we worked with included Gift of Hope Organ & Tissue Donor Network (Chicago), The California Transplant Donor Network (N. CA and Nevada), the National Kidney Foundation of Middle Tennessee (Nashville area), New England Organ Bank, Washington Regional Transplant Community (DC area), Louisiana Organ and Tissue Donor Registry, Life Alliance Organ Recovery Agency (Miami), Gift of Life Donor Program (Eastern PA, southern NJ, and Delaware), and Donate Life Today (WA and Montana). Each of these organizations can give you information about donating in your community. They also offer resources for transplant recipients and patients waiting for a transplant.

Through the Kidney Early Evaluation Program (KEEP^®) the National Kidney Foundation of Middle Tennessee in the Nashville area 226 people at risk for kidney disease were given free screening tests last year. The National Kidney Foundation’s nationwide KEEP offers free screening for those at risk – anyone 18 years and older with high blood pressure, diabetes or a family history of kidney disease.  KEEP provides three simple tests that determine kidney function to thousands of people each month in dozens of cities across the U.S.  Pat Spurgeon’s story in D TOUR highlights the need to regularly monitor kidney health for those who are in at-risk categories.

In St. Louis we met husband-and-wife speakers, Keya and Darion. Keya was surprised to find herself a perfect donor match for her husband, Darion. “The decision to be a donor was very easy because I wanted my husband alive and healthy and to live a long life with me. The film reminded me of the importance of what I did as a donor.” For husband Darion, “The film triggered feelings I had forgotten. The film was like looking in a mirror. At 23 when I needed a kidney I felt invincible but this film makes you aware that kidney failure can happen to you or someone you know at anytime.”

Based on observations at our events and talking to our partner organizations afterward, we estimate that at least 50 people signed up to become organ donors with their local registry (including one of our own regional event producers and two ITVS staff members) at D TOUR events.  Up to 50 lives can be saved or made better by each donor, which means that about 2500 people could potentially benefit from connections made at D TOUR events in September. June R. Wallace, Community Affairs Coordinator, for California Transplant  Donor Network said after the D TOUR event she attended in Oakland,”The filmmaker captured the experience of just what a recipient, their families,  and their friends go through while waiting. The emotional rollercoaster of waiting for an organ is devastating.  My volunteers were so impressed to see both sides of  the process, and it gave them more encouragement to continue this great work they do.”

Washington DCJCC screening 9/13/09 – left to right Ellen Weiser (kidney recipient), Elaine Weiss (liver recipient), Jean Cook (Future of Music Coalition), John Odgen (WRTC), Ellen Blaock (donor parent)

Sunny days in September usually spell bad news for an indoor Community Cinema DC event. So do home team football games, and street festivals. We welcome everyone at our events, nevertheless. Thanks to our community partners the Washington Regional Transplant Community (WRTC) and the Future of Music Coalition (FMC), we had four perspectives represented at our two D TOUR screenings: the donor family, transplant recipients, living donor, and music community.

At our first screening – hosted by the Washington DC Jewish Community Center – Jean Cook, executive director for the Future of Music Coalition, talked with the audience about their program HINT (Health Insurance Navigation Tool), which helps musicians navigate the health insurance maze and find an affordable plan. This will be a session in the FMC’s upcoming Summit October 4 – 6 in DC.

The WRTC has built a local community of supporters, many of whom speak from experience at events like our screenings. Representing a donor family perspective, Ellen Blalock shared her story about her daughter Jennifer who died from injuries from a car crash in 1993. Jennifer, who was 16 at the time, was returning home from a long-day of volunteer work driving from Virginia to Maryland when she fell asleep at the wheel.

Ellen shared the story of her family’s decision to donate Jennifer’s organs while at the hospital. It was also at that time they discovered that when Jennifer got her driver’s license she had registered to be an organ donor. Unlike the donor family in D TOUR, Ellen says Jennifer’s gift “does not bring closure,” but it does bring “meaning” to their loss and grief. And from this point on her family must endure.

Busboys and Poets screening 9/19/09 – left to right Amy Luxner (heart recipient); Rachael Rossmeiss (donor daughter); Sahra Torres (living kidney donor)

Like Pat in the film, Ellen Weiser is a kidney transplant recipient. She suffered from high blood pressure, but never expected her kidneys to shut down because of it. Ellen went on dialysis for several years. She had to leave work and spend 5 hours on her treatment. She was put on the list for an organ transplant and had two near-misses before a kidney was finally a match for her. Ellen Weiser and Elaine Weiss, a liver transplant recipient, both experienced the shock, fear, frustration, and benefit of their organ transplant experience. Elaine had contracted hepatitis B from an infected needle when she was being treated for a parasite while on a family trip in Cuba. She described her self as “healthy 28 year old” before her illness.

John Ogden of the Washington Regional Transplant Community filled in the blanks about the number of people on the recipient list – 106,000 and counting which is why the donor registry is very important.

It was another bright sunny day for the street festival right outside Community Cinema venue, Busboys and Poets, the following Saturday. Most of the audience for Community Cinema were registered organ donors including Andy Shallal, the owner of Busboys and Poets. Andy welcomed everyone to the Langston Room and announced the festival outside re-dedicated Langston Way for the poet Langston Hughes.

Our speakers were Amy Luxner, a heart transplant recipient now in her 11th year. She talked about the conflict between happiness to still be alive but at the same time knowing it is the result of someone who lost their own life. Rachael Rossmeisst is a donor daughter. Her father was killed in a bicycle accident three years ago. Rachael shared her emotional story. Her father had a donor card. Rachael’s family has organized bicycle marathons in memory of her father. She’s also getting married in 7 weeks. Her fiancé was in the audience. Casey Rae-Hunter, director of communications for the Future of Music Coalition talked about the number of musicians working without health insurance.

The good news of the day was that 3 people became registered organ donors at the Busboys and Poets screening. One registrant was a walk-in. One was ME! A fourth took a form home to discuss with his family.

D TOUR shares many compelling stories for people considering if they should sign up for the donor registry. I hope organizations like WRTC can use the film D TOUR for future donor drives. The film fits well with the WRTC mission to increase transplant awareness throughout a variety of communities.

I met Evan Farrell, former Rogue Wave bassist, several years ago when I was visiting an old friend in Bloomington, IN. My friend played in a bluegrass combo with him (they also worked construction together to pay the bills). Evan is not someone you can forget. He was an in-your-face kind of guy with an infectious lust for life. You got the feeling that if things ever got dull, Evan would shake it up in a hurry and not allow complacency to set in anywhere he was at. That was in my previous life, back when I worked at a record label.

Having been involved in the underground arts and music scene, I am well aware of the health issues faced by struggling artists. Each month there is a benefit at some venue in town for a musician dealing with health care costs. So it was especially important to me that our post-screening discussion included not only the crucial story of organ donation, but also to pass along resources for uninsured or under-insured artists.

I found out about the work of Dr. David Hinkamp and his Health in the Arts program at the University of Illinois at Chicago. With a background in occupational health, Dr. Hinkamp cares very deeply about the health of artists, including touring musicians. He LOVED the film––and watched it three times.

Gift of Hope Organ & Tissue Donor Network gladly signed on to partner with the screening. Alison Smith, vice president of operations for Gift of Hope, agreed to be on the panel but didn’t get a chance to view the film and ended up seeing it for the first time with the audience at the Cultural Center.

I’m sure it was not easy to have transitioned from the emotional ending of D TOUR to getting up on stage. She added important background statistical information on organ donation and addressed the audience members’ question about what would have happened had Pat not picked up the phone when the perfect match organ became available. She explained that the California Donor Network would have been given an hour to reach Pat before giving up and moving down to the next name on the list. The organ must be transplanted quickly, so thankfully Rogue Wave was not on tour at the time.

I wanted a musician on the panel who had dealt with health issues and the struggle for affordable care. One of our national partners is the Future of Music Coalition touting their groundbreaking Health Insurance Navigation Tool, which helps musicians understand the insurance terrain in their state and figure out the best course of action for coverage.

Tyler Beach, a Chicago musician and songwriter with the bands Leaf Bird, and Leaves, is diabetic and so has to contend with the touring tradition of irregular meals and bad road food. He related to Pat’s story on many levels, particularly Pat’s commitment to music and eschewing the “Plan B.”

Our moderator, Carrie Shepherd, asked Dr. Hinkamp if there was ever a time when he advised a musician to give up playing for the sake of their health. He replied “If I said that, that patient would never come back.”

That night, at everyone’s favorite community-oriented venue The Hideout, there was a benefit for beloved local musician Lawrence Peters, who recently broke his heel. Several bands ironically played songs by the seminal underground band The Fall in tribute to Lawrence’s accident. In true Chicago benefit tradition, the club was packed.

Naomi Walker

Regional Outreach Coordinator

D TOUR chronicles Spurgeon’s search for a living kidney donor and the challenges with finding a viable match. Learn about the myths and facts of organ donation from a panel of local experts and get a chance to ask Spurgeon questions about his life, what he’s learned and how he’s moving forward. Staff and volunteers from the Gift of Life Donor Program will also be on hand to sign up organ donors and answer your questions.

This event is a co-presentation of ITVS, WHYY, Gift of Life Donor Program and PhillyHealthInfo.org.

Save the date:

DATE: Wednesday, September 23

TIME: 6:30 PM (doors open at 6:00 PM)

WHERE: College of Physicians of Philadelphia, 19 S. 22nd Street

Get information on parking >>

Reserve seats in advance (click here) or call 215-351-0511

Also don’t miss this special offer: Two free tickets to the Mutter Museum will be given out to audience members who attend the event and sign up to become a member of WHYY and receive information from PhillyHealthInfo.org. **You must attend the event to be eligible to receive this offer.

Learn more about Community Cinema >>

Donate Life California and ITVS have recently partnered to spread awareness about organ donation for the upcoming Community Cinema screening of D TOUR in Oakland, CA at 6:00 PM, September 23, at the Oakland Asian Cultural Center. The film chronicles musician Pat Spurgeon’s search for a living kidney donor and the challenges associated with finding a viable match.

Taking a few minutes to register as an organ and tissue donor can mean a lifetime to someone else.

For those living in California, register on the Donate Life California Web site >>

Find out about upcoming screenings of D TOUR near you >>

Regional Outreach Coordinator Allison Inman with Dave Pomeroy, Kenny Walker, Craig Krampf, Teresa Davidson, Sam Rogers.

It was a coincidence (but not a surprise) that we had two rock drummers on our D TOUR panel in Music City. One, Craig Krampf, helps musicians find affordable health care as secretary/treasurer of the Nashville Musicians Association (formerly Nashville Association of Musicians). The other, Kenny Walker, is a kidney recipient who regularly shares his story in conjunction with the National Kidney Foundation of Middle Tennessee. Kenny’s experience was much like Pat Spurgeon’s––he was a drummer in a heavy metal band and was sidelined when his kidney failed. He also received a perfect-match kidney from a 19-year-old donor.

Between those two drummers––as well as Dave Pomeroy, president of the Nashville Musicians Association and NKFMT Executive Director Teresa Davidson and Program Director Samantha Rogers––we had mostly every angle of the film covered during our post-screening discussion. Kenny, Teresa and Samantha schooled us on organ donation, helping us understand both the urgent need for donors and the simple steps we can take to sign up. We discussed the importance of talking with family about an individual’s choice to be an organ donor (even if you’re signed up, they can overrule). Craig and Dave addressed musicians, letting them know their options for health care through their organization and national groups like the Future of Music Coalition. This is extra important because many musicians have trouble getting covered.

D TOUR is a powerful film, and I heard a lot of sniffles during the final 10 minutes. After the screening a woman said her aunt died while waiting for an organ transplant. She said that it’s one thing to know that donation is important and another to experience that urgency first hand––and that Pat’s experience on screen helps the viewer understand how that feels.

We measure the success of screenings in different ways. Here’s one: Yesterday, I got a Facebook friend request from someone who’d attended the screening.

I was pleased to see that her Saturday afternoon status was:

“I want everyone to do two things: 1. Watch the film D Tour on your local PBS this fall (check listings) 2. Have an honest conversation with yourself and your loved ones about being an organ donor. That is my Saturday soapbox .”

She has 947 friends.

Thank you, new Facebook friend Millie C., and thank you, NPT, Nashville Public Library, Hands On Nashville, National Musicians Association, National Kidney Foundation of Middle Tennessee. Thanks also to Grimey’s New and Preloved Music (where Nashvillians can buy Rogue Wave records) for the newsletter shout-out, the Nashville Scene for the film page pick, and Bongo Java for donating coffee.

- Allison Inman

Regional Outreach Coordinator