Cancer The Good Fight

A Hopeful Lens

How this mom’s personal tragedy inspired a global photography project.

In December 2011, after Cynthia Dawson’s four-year-old daughter Ava started losing her balance, Ava was diagnosed with a terminal brain tumor called diffused intrinsic pontine glioma (DIPG). Ava’s only treatment options were experimental, so the family moved from Texas to Arizona so Ava could participate in a clinical trial.

A self-proclaimed hobbyist photographer, Dawson looked for a photographer in Phoenix who was willing do a pro bono photo shoot with Ava, documenting the girl’s kind spirit and love of pink for posterity. To her surprise and disappointment, Dawson came up empty.

Later, Ava’s tumor progressed and the family returned home to Texas, where Dawson knew a larger network of photographers. Ava had her photo shoot in 2012, one month before she died. At that point, Ava had already lost her ability to walk, so it came at a grave time for the family. “She didn’t understand what was happening to her body,” Dawson says.

Still, dressing up in a pink dress and a sparkly gold crown brought Ava joy. “At her session she was very happy and she was able to be herself and laugh and giggle,” Dawson says. “To have those memories of her being so joyful is something we always treasure. [Those photos] mean everything to us. It’s a physical reminder of her.”

Photo: The Gold Hope Project

The Gold Hope Project

Dawson called that photo shoot the first Gold Hope session. She saw a need for pro bono photography services to help other families dealing with pediatric cancer create memories and share their stories. “When Ava was sick, I wanted people to know more about the things she was going through, what her diagnosis meant,” Dawson says. “Being able to share their child’s journey is so therapeutic, to let the public know, ‘my child is not a statistic.’ I think a lot of the times people hear certain statistics and it’s easy to forget, it’s real people behind the numbers.”

When Ava was sick, I wanted people to know more about the things she was going through, what her diagnosis meant… My child is not a statistic.

To that end, Dawson co-founded the nonprofit organization Gold Hope Project, which achieved 501(c)3 nonprofit status in late 2014. The organization works with professional photographers all over the world (over 500 at last count) to photograph “fighters” (kids battling cancer), survivors, and their families. They also create remembrance photos for kids who’ve already passed. The organization then shares fighter stories on its blog to raise awareness about pediatric cancer. Dawson says proudly they completed their 500th fighter session this summer.

Photo: The Gold Hope Project

Destigmatizing Illness Through Photography

Erin Wilkos’s son Nate is one of those fighters. About a year after Nate was diagnosed with acute Lymphoblastic Leukemia, Wilkos saw a Facebook post about the Gold Hope Project and applied for a session. “We weren’t sure if Nate was going to make it or not,” Wilkos says. “He almost passed away a few times. We figured a professionally done photo, even if it was the last memory of him, would be something we could cherish.”

Fortunately, it wasn’t the last memory for this Connecticut family. “Nate is 15 and is doing absolutely fabulous,” Wilkos says. “He is nine years off chemo and just joined the football team and is a junior firefighter.”

Nate and family still do cherish the photo shoot experience. “The photographer met with him and myself and my husband,” Wilkos says. “Nate was really into the army and liked owls, so she set up the most amazing backdrop and had an army uniform for him. He loved it!”

GPH gives families the option to order an album of images from their session, so Wilkos did. But their album got mixed up with another family. “Our book went to someplace near Alaska and we got someone else’s book,” Wilkos says. “In communicating with her, I discovered she had a farm that had snowy owls. We exchanged books and she sent along a bunch of photos of snowy owls for Nate. We check in every once in awhile.”

Photo: The Gold Hope Project

A Life-Changing Photo Shoot

Of course, the Gold Hope sessions don’t just benefit the fighters and their families. Some of the photographers who volunteer their time and expertise also find the experience cathartic. Having two kids of friends get diagnosed with acute lymphoblastic leukemia and another friend’s kid diagnosed with a rare blood disease “hit me in a way that I couldn’t put into words,” says Brittany Blake, a photographer in Orange County, California. “I knew that I wanted to give back.”

In September 2017, Blake shot her first fighter session, which she describes as “life changing.” Her nine-year-old fighter was in remission from leukemia. “She was so strong but you could also tell cancer had broken her in so many ways,” she says. “I had a daughter who was a year older at the time. As a mother, it was heart-breaking to try to imagine everything this girl had been through.” Blake stays in touch with several of the families she’s photographed.

Photo: The Gold Hope Project

Dawson says these fighters and their families “have a really unique spirit usually and I think that definitely rubs off on the photographers who get to work with them one on one.”

As the Gold Hope Project grows, Dawson hopes to raise money to help fund critical research on pediatric cancers. “The stats are unfair when it comes to pediatric cancer specific research, a fact I learned after Ava got sick,” she says. “Her type of cancer had no new medical advancements in over 40 years due to lack of research. This year we will be able to join other organizations and fund research grants specific for DIPG and we are hopeful that one of these research studies will lead to better treatment options and one day a cure.”

For fighters stories or to find out how you can get involved, check out The Gold Hope Project’s website.

Chronic Illness Q&As The Good Fight

Taking The White Dress Back Out Of The Closet

Millions of women suffer from fibroids across America, but through the White Dress Project, Tanika Gray Valbrun is helping show that fibroids are nothing to be embarrassed about.

Fibroids—benign tumors that grow in or outside of the uterus—can be more than an inconvenience for women. Ranging in size from a pea to a melon,they can be down right debilitating, creating crippling symptoms ranging from anemia to infertility. Worse? Whether out of ignorance or out of stigma, women often suffer through in silence, despite the fact that they are incredibly prevalent: According to an American Journal of Obstetrics and Gynecology report, between 80 and 90 percent of African American women and 70 percent of white women will develop fibroids by age 50.

Through her nonprofit organization The White Dress Project, Atlanta resident Tanika Gray Valbrun, 40, is turning to spotlight on how fibroids affect women’s health. By encouraging women with fibroids to wear white, Valbrun hopes to raise awareness around fibroids, while simultaneously symbolizing the strength, courage, and perseverance of the millions of women around the country who deal with the issue every day.

Folks sat down with Valbrun to find out why she established the White Dress Project, why it’s important for women with fibroids to stick together, and what she hopes will happen to the movement next. This interview has been edited for length and clarity.

Tanika Gray Valbrun’s experience with fibroids inspired her to create the White Dress Project.

Explain why this cause is so personal for you.

It runs in the family. My mom lost two sets of twins to fibroids. She lost a set before me, got pregnant with me, and then she lost a set of twins after me. But even though my mother told me about her fibroids, you still don’t get the reality until you experience it yourself.

Even though my mother told me about her fibroids, you still don’t get the reality until you experience it yourself.

When did you learn you had fibroids?

I was diagnosed at 19. I’d always had heavy periods. My stomach always looked like I was three-months pregnant, but even through all that, I said “whatever.” I just thought that’s how periods were. After I was diagnosed, I started going to specialists. Some doctors would say to just watch and wait. But the problem with watching and waiting is that the fibroids are growing.
As soon as I started talking about it, everybody came out of the woodwork with their story.

Did the symptoms hinder you in any way?

There are so many women who have severe anemia because of fibroids. I am one of them. I’ve had five transfusions because I was severely anemic.

Fibroids completely took a hold on my quality of life. I wouldn’t go to white parties or have anything white in my closet. That may seem a bit superficial, but it made me think about how I’d never done so many things because of fibroids. I wouldn’t get a car with cloth seats because it’s harder to get blood out of it. You’re conscious about sneezing because you don’t want to worry about being embarrassed because you’ll mess yourself up. It takes a toll on you.

Why are fibroids such a misunderstood issue for women?

I think that there’s a stigma because women aren’t talking about it. We’ve been taught that we don’t talk about issues below the belt. We don’t talk about periods because it happens once a month, so it’s nothing special. You just prepare yourself, take the necessary medicines, and keep moving. But if we’re not talking about it, then no one else is going to take it up for discussion for us.

What did you learn about fibroids that was surprising to you?

It really shocked me how many women suffer from fibroids. Even though there are so many, so many of us aren’t talking about it.

I was also surprised when a doctor told me I was developing pica from fibroids.With pica, you crave certain things, like ice or soap or clay. I’d become so anemic, I had a strong craving for soap, just for the minerals. I didn’t always want to eat it, but just taking it out the package and smelling it was so soothing to me and made me feel stronger.

I realized that it was connected because as soon as I would have a transfusion I couldn’t stand soap.

The White Dress Project helps women come out of the fibroids closet.

What are some things women should be mindful of before or after a diagnosis?

What I’ve always told women to do is to be in tune with what is going on in their body. When you feel something is off, it’s time to get it checked out.

Any consistent pain means something needs to be addressed.

Any consistent pain means something needs to be addressed.

How large is your reach?

We have a chapter in the D.C./Maryland/Virginia area, and we have a presence in New York City, LA, Houston and in South Florida. We launched an ambassador program for people who had an interest in joining us and helping in any kind of way. Women volunteer and coordinate events in their region or city.

It’s relatively small and growing. It’s grassroots movement.Getting people to know we’re here, that’s half the battle.

Besides the personal experiences, why was it important to start this campaign with a potentially global reach?

There’s nothing being done about it. I was shocked that there are no runs, no T-shirts, nothing about fibroids awareness. When I started the organization, someone asked me: “Has anyone died from this condition?’ I was taken aback: dying shouldn’t be the standard that something needs to be advocated for.

If there were more funding, it would help to get the conversations going. If more legislators supported reproductive issues, that would also get conversations going.

What’s next for the White Dress Project?

We want to move toward a membership-based organization with dues so that we can support women with fibroids. We want to build a community. We’d like to assist with scholarships and grants to help women with copays or help medically no matter what stage they’re in. If someone needs help with recovery we’d like to provide support, like send meals to her house while she recovers.

We also want to ramp up fundraising so that we can dedicate funds to fibroids research. There are researchers who are looking at this but they may not be able to dedicate all of their research hours to fibroids research.

How does one help the White Dress Project or get involved?

They can visit or  to get information and donate there, or they can follow us on social media, which has been important for us. We’re @WeCan_WearWhite on Twitter, We Can Wear White on Instagram, and The White Dress Project: We CAN Wear White on Facebook.


Mental Health The Good Fight

How To Spot A Fake Service Dog

Service dogs helps hundreds of thousands of people live their daily lives, but counterfeits muddy the waters and create chaos. That's why Lon Hodge and his dog Gander are trying to educate people.

Sitting in a local restaurant, the man with the Great Dane laughs as his dog romps from table-to-table in hopes of getting dinner scraps. His fellow diners are not so amused. No one stops the dog because he’s wearing a service vest.

“That Great Dane is a fake,” says Lon Hodge, a Vietnam veteran with a real service dog named Gander. Lon often reads Tweets, news articles, and Facebook updates about people being denied entrance into commercial establishments because they have a service dog with them. He knows this firsthand: he and Gander are frequently turned  away from restaurants, hotels, and stores.

Lon suffers from Post Traumatic Stress Disorder (PTSD) and relies on Gander, a Labradoodle, to keep him calm. When Gander hears Lon’s voice start to rise, he licks his hand. “If I don’t respond,” he says, “he gets up and puts his front paws on my chest and looks me in the face. It’s almost as if he’s asking ‘if I’m okay?’”

A Mission Of Understanding

A black-and-white portrait of a middle-aged man sitting on a chair, rubbing noses with his shaggy service dog.

Lon Hodge and his service dog, Gander.

He and Gander are on a mission. They travel the country teaching business leaders and their employees how to spot a real service dog from a fake. Through his nonprofit, Operation Fetch, they educate veterans and businesses about people with visible and invisible disabilities, like PTSD.

In the past two years, they partnered with Amazing Pet Expos to talk to people in the pet industry about service dogs. Everything from how to get a service dog to training them to caring for them and, of course, detecting fakes are covered.  (Plans are in the works for another expo to be held next May. Details will be posted on their Facebook page.)

Lon works with businesses to educate them and the public about just what a problem fake service dogs are. He’s given talks at the corporate offices of Starbucks, McDonald’s, Walmart, and Vantage Hotels. “These corporations want you to shop in their stores,” he says. But when businesses turn people with real service dogs away because of negative experiences with counterfeits, they often hurt their own business, and the lives of their customers.

What Makes A Service Dog ‘Real’?

“Service dogs help people live their lives more independently,” says Brianne Corbett, vice president of client services and dog operations at Freedom Service Dogs of America. “The handler and service dog are in tune with each other. And while most of us have a special bond with our pets, service dogs are more than pets.”

The Americans with Disabilities Act (ADA) defines service animals as dogs individually trained to do work or perform tasks for a person with a disability. Service dogs provide a range of duties–from turning lights on and off, retrieving keys, keeping veterans with PTSD free from stress, and a host of other tasks. The ADA doesn’t call them pets.

“With PTSD, it’s hard to lift your head above your anxiety,” says Lon. “Gander keeps me calm. Like a person in a wheelchair, that person needs his chair to move about. I need Gander for the same reasons. He’s not my pet; he’s my service dog.”

“Like a person in a wheelchair, that person needs his chair to move about. I need Gander for the same reasons. He’s not my pet; he’s my service dog.”

While most pet owners have a tight bond with their pets, it’s different with service dogs. Carol Bryant, a dog blogger and publicist, travels everywhere with her dog Dexter. He doesn’t wear a service vest and she won’t go into places that don’t allow dogs. Plain and simple, she respects the rules and would never take Dexter where he isn’t welcome. That means dining in hotel rooms when she’s on the road in order to spend more time with her dog. If she goes to a meeting and can’t bring her dog, her partner willingly steps in to watch him.

The head of a shaggy service dog with white hair.

The sign of a true service dog like Gander, Hodge says, is he’s practically invisible.

Dogs With A Job To Do

People with service dogs don’t have that option. They need to be with their service dog all the time, and that’s the true sign of a real service dog. “It’s not a real service dog if you check into a hotel and leave the dog in the hotel room when you have dinner or go out somewhere,” Lon says.

When Lon brings Gander into a restaurant, most people have no idea he’s present. “He’s quiet and usually lies under the table,” he says. “He’s never approached anyone. That’s a sign of a service dog. Still, I can understand why some people don’t know the difference. It’s confusing.”

Shutting Down The Counterfeits

So, how can this be resolved? According to Lon, there’s a movement circulating to shut down phony registries. Anyone with an active credit card can go online and purchase bogus vests and ID cards stating you have a real service dog. Lon’s not in favor of shutting down these operations because, “where there’s an illegal will,” he says, “there’s a way; people will circumvent the law in an absence of true standards.”

Instead, Lon wants to see a national conference on standards, training, and registry that brings together hotels, restaurants, law enforcement, the ADA, dog trainers, service dog agencies, and people like him with a vested interest in a peaceful coexistence and accommodation.

“Our goal is to try and fix this with the least possible stress for everyone,” he says. “People just aren’t informed. When they listen to me and when they meet Gander, they get it.”

The number of service dogs is not accurately known, since there’s no real registry. Congress did a study in 1990 and found there were 43 million Americans with disabilities and approximately 387,000 service dogs across the U.S.

A service dog wearing a collar with a red bone around it, standing on a speckled carpet in front of a screen with the Walmart logo.

Lon and Gander speak to companies to educate them about why service dogs are important, and how to spot the fakes.

Roughly 20 veterans commit suicide each day nationally according to a report from the Department of Veterans Affairs. “Life profoundly changes for the better when veterans with PTSD and brain trauma injuries are paired with a service dog,” says Corbett.

Changing The System, One Dog At A Time

Gander continues to improve Lon’s life. He’s a rescue from a Colorado kill animal shelter who took part in a prison dog training program and received additional training from Freedom Service Dogs in Englewood, CO. He’s been with Lon since 2012. Home is in Chicago; yet, they spend more than 50 percent of their time on the road addressing corporations, businesses, Rotary Clubs, veterinary colleges, universities, and bar associations about service dogs.

After listening to Lon and meeting Gander, Starbucks, McDonald’s, Walmart, and Vantage Hotels now welcome service dogs. Unfortunately, not all companies are receptive. After three separate incidences with American Airlines, Lon is now in a court battle with them. “Google American Airlines and veterans with service dogs and a few lawsuits pop up,” he says. “We call ahead and are told everything will be fine,” he says. “And then at check-in, they give us a hard time, asking for certification that doesn’t exist and threatening that Gander can’t fly with me. It triggers my anxiety. Even the Service Dog of the Year was banned from an American Airlines flight. ”

Lon wants people to think of him and Gander as a team. “People need to understand that Gander’s an extension of me,” he says. “I owe him an incredible debt of gratitude.”

“My wife, who’s a Chinese historian, says Gander was a ‘bodhisattva,’ which in Buddhist lore is a character that has reached enlightenment, but has decided to stay on earth to teach compassion and love. My wife says if I get reincarnated, I’ll come back as Gander’s servant because he does so much more for me than I think I can ever do for him.”

Genetic & Congenital Diseases The Good Fight

License To Drive

For babies with mobility issues, the cool ride-on cars provided by Go Baby Go! are even better than motorized wheelchairs.

City YearWhen Kelly David’s two-year-old son Colin waves and zips around the front yard in his little red ride-on car, onlookers don’t see a toddler with visual or mobility impairments. They just see a regular kid exploring his surroundings and enjoying the Florida sunshine.

“Nobody outside of our circle really knows that [the car is] a form of mobility for him,” David says. “It doesn’t look like medical equipment. It doesn’t draw attention to itself.” David is referring to the car that was modified for Colin through a program at the University of Central Florida (UCF) called Go Baby Go!.

Colin has visual impairments caused by albinism and mobility issues caused by a rare genetic disorder called Angelman Syndrome. Colin’s speech language pathologist at UCF suggested that he might benefit from a modified ride-on car and referred him to Dr. Jennifer Tucker in UCF’s physical therapy department.

David has observed that, since Colin got his car this past spring, it seems to have broadened his worldview. “I think he’s realized there’s more to the world than what’s in his bubble, what was previously in his visual field,” she says. “We’ve seen him figure out how to map around the house now. It’s really instigating and encouraging that exploration by giving him a tool to do that.”

Researcher Sam Logan and a team of volunteers modifying an off-the-shelf ride-on car to be safe for kids with mobility issues.

A motorized wheelchair can cost tens of thousands of dollars since it’s a medical device, but a modified ride-on car for kids costs around $200. “Motorized wheelchairs are much more robust in terms of battery life, and they can go in any direction,” says Sam Logan, an assistant professor at Oregon State University (OSU) who oversees an undergraduate student club that modifies cars. 

The motorized wheelchair industry tends to focus more on adults since kids outgrow them so quickly. The cars Go Baby Go! modifies do not replace the need for other medical devices, but they provide fun and mobility for developing kids.“It’s not a perfect one-to-one solution,” he admits–motorized wheelchairs are still better–but a ride-on car can still give a child with mobility issues the first autonomy they have.

“It’s a pretty big deal for families,” Logan says. “A lot of these kids have not had any access to moving on their own [before].”

“A lot of these kids have not had any access to moving on their own [before].”

In addition to OSU’s student club, Oregon also has a monthly community build night in Portland. “Families will come and they have some of the modification supplies, or families will bring cars,” he says. “In one evening, they’ll modify the cars and families can take them home that night.” Once a child outgrows a car, the family can pass it on to someone else or give it back to Go Baby Go! so another child can use it.

Go Baby Go! started a decade ago at the University of Delaware, and now has 75 chapters worldwide, including a nationwide partnership with BMW New Zealand.

Go Baby Go cars give some children with special needs their first taste of real mobility.

Cole Galloway, a professor of physical therapy at the University of Delaware, received a National Science Foundation Award to study brain development in babies. Galloway’s research showed that he could spur cognitive and motor skills development in toddlers before they could even crawl using an experimental robot outfitted with a joystick. The robot cost tens of thousands of dollars to make and was intended for research. However, families of children with mobility issues desperately wanted one their child could use in real life so their child could move and develop too.

“I would get phone calls from parents crying on the answering machine,” Galloway says. “They kept asking me ‘when it is going to commercialized? When is this going to be available?’ They weren’t seeing it as research, they were seeing it as a real device.” He notes that parents of a two or three year old with mobility issues don’t have the experience of chasing around their child or watching the child chase a family pet, and they often worry about school readiness.

Galloway’s mentors advised him to focus on the research and let the community impact be someone else’s work,  but Galloway couldn’t turn his back. The question of whether he could also spur their development nagged at him. A high school student working in his lab asked, “Why don’t we go to Toys ‘R’ Us … and just build stuff?” Instead of manufacturing expensive robots for research, they bought little motorized ride-on cars and modified them for kids who couldn’t, for example, push a gas pedal or who needed extra trunk support to sit upright.

“Why don’t we go to Toys ‘R’ Us … and just build stuff?”

Instead of patenting these modifications, Galloway shared them freely with the world. Chapters have sprung up in universities, Kiwanis clubs, schools and other organizations. When Fisher-Price called two-and-a-half years ago, Galloway panicked. Would they object to him using the Go Baby Go! name (a name used on many of their toys) or modifying their product?

Actually, they said they loved the concept and wanted him to do a workshop with their designers. Galloway has also conducted a workshop for Daytona 500 and has plans for a workshop with Mattel. These hands-on workshops serve as a team-building activity and also provide a tangible benefit since they’re modifying cars to be used by real kids. “They are interested in corporate giving that provides a personal context,” Galloway says.

High-fives all around.

Aside from the stories of delighted families, Galloway says his preliminary research on children with Down syndrome also supports the use of ride-on cars for therapeutic purposes. “We believe that cognition language and movement are enhanced with ride-on cars,” he says. “A child that hasn’t been moving gets the chance to decide how and when to move.”

As for the David family, Colin started waving his hand after he starting using his car, so it’s also boosted his social engagement. “That’s really the first time that we saw him purposely wave,” David says.

As Galloway says, “mobility is a human right because it affects so much of our lives.”

All photos courtesy of Oregon State University.

Mental Health The Good Fight

The World’s Only Classical Music Ensemble For The Mentally Ill

After his own career almost unraveled, Ronald Braunstein founded the Me2/Orchestra to help fight the stigma against mental illness in the classical music community.

Prizewinning conductor Ronald Braunstein had a much-heralded early career in the classical music scene that began to unravel due to his bipolar disorder. But his experience with this condition eventually led to the founding of the Me2/Orchestra: the world’s only classical music ensemble for the mentally ill (and their advocates).

The conceptual origins of Me2/ date back to 2007, when Braunstein, then living in Prague, observed the huge gap in music education between public and private schools. “I wanted to create an orchestra that was inclusive of students from all socio-economic levels. The idea never went anywhere in Prague but I picked up that seed a few years later in Burlington [Vermont] – only this time my heart was in it. The inclusion I sought had to do with mental health rather than economic disparity,” he says.

There was good reason why mental health was a priority: Braunstein had just been fired from a job because of his bipolar disorder. “I was in the process of sorting out my mental and physical health and I knew I didn’t want to get a job where I could be discriminated against again. I decided to create my own orchestra and ensure that it was a safe place,” he says, before adding, “I knew that if I was feeling so much pain from being discriminated against that there must be other people like me.”


Ronald Braunstein.

I knew that if I was feeling so much pain from being discriminated against that there must be other people like me.”

Braunstein, who was born in Massachusetts but raised in Pittsburgh, says that as a child his father took him to see a doctor, who diagnosed him with “bad nerves” and “prescribed some type of medication, maybe it was valium.” He adds how, “Over the years several people told me that I needed to see ‘a doctor,’ but this was during the ’70s when nobody spoke [about] mental health and I honestly didn’t know what they were trying to tell me.” For many years he contended with symptoms “but things started to get really revved-up in [his] early twenties.”

While studying at New York City’s famed Juilliard School his condition became severe. “I ate very little and didn’t sleep. I thought that food and sleep took away my brilliance. I experienced all of the classic bipolar behavior: delusions of grandeur, rapid pressured speech, irresponsibility in dealing with money, etc.”

However, he managed to graduate from Juilliard in 1978 with a degree in conducting. And at age 23, he became the first American to win the Gold Medal in the Herbert von Karajan International Conducting Competition in Berlin. This prize greatly boosted his early career and took him all over the world as a guest conductor at orchestras ranging from San Francisco to Norway to Japan. He later joined the Juilliard conducting staff.

Braunstein was first diagnosed with bipolar disorder in 1985. “I took a friend to his psychiatrist appointment,” he recalls. “And, through an odd turn of events, I walked away from that office with my own diagnosis.” He feels that the stigma surrounding mental illness has decreased since the time of his diagnosis, but “we still have a long way to go.” That said, he hasn’t encountered any stigma-related obstacles when trying to arrange a Me2/ performance. And he views the orchestra as helping to “change audience members’ perceptions” about the mentally ill by “showing what we are capable of in performances.”

Many believe a link exists between creativity and mental illness, and Braunstein notices a particular prevalence of bipolar disorder among the musically gifted

Many believe a link exists between creativity and mental illness, and Braunstein notices a particular prevalence of bipolar disorder among the musically gifted. Of brilliant composers likely afflicted, he gives a slew of examples: Schumann, Tchaikovsky, Mahler, Berlioz, Bruckner, Rachmaninoff, Elgar, Handel, Holst, Mussorgsky, and Rossini. Another prominent example is his favorite composer, Beethoven. He also admires Tchaikovsky, Johannes Brahms, Otto Klemperer (whose battle with bipolar disorder was well-documented), and Igor Stravinsky. Among his influences are Leonard Bernstein, Seiji Ozawa and, especially, his mentor Herbert von Karajan, the longtime conductor of the Berlin Philharmonic, who taught him “how to really hear the orchestra” while conducting.

Braunstein conducting the Me2/Orchestra.

Of his own dual experience with gifted musicianship and mental illness, he says: “When I am in a manic phase I can be brilliant, or so it seems. When I come to a more stable point I can see whether the brilliance was actual or an illusion. And then there’s the question I always have after conducting a great concert: whether it was my musicianship or my illness.” He says that his symptoms are managed more effectively these days and are less likely to distort his self-perception. Previously, he was more inclined to have a “lack of insight into how [he] was doing” and hold an unrealistic opinion of his performance.

The question I always have after conducting a great concert [is] whether it was my musicianship or my illness.

The flagship chapter of Me2/ was established in September 2011 in Burlington, Vermont. September 2014 saw the launching of the Boston chapter. Though many members have diagnosed conditions, Me2/ also includes those who support the mentally ill, along with mental health professionals, such as one psychiatrist who plays trumpet for the Boston orchestra.

Me2/ has performed at several formidable venues, such as prisons and psychiatric hospitals – settings that don’t exactly evoke thoughts of classical music, but actually have provided the most engaged and appreciative audiences. In such places, the music “reaches their souls,” observes Braunstein, who adds how Me2/ has “never been unappreciated” at any type of venue.


Currently, fifty musicians belong to the Me2/Burlington, and the Boston chapter has 35. The orchestras perform 5 or 6 times per concert season. Of the musicians who join, almost all stay for a long period. There are no auditions to worry about. Braunstein’s programs are “designed for the middle-level of the orchestra. For the people who are less experienced, we offer coaching but technical perfection is not what we are about. We have professional musicians sitting alongside near-beginners and it works.” Many other members are skilled amateurs who “received extensive training earlier in life.”

Among mentally ill members, conditions range from depression to PTSD to schizophrenia to dissociative disorder, among others. Members aren’t required to disclose their diagnoses, but some do so “within the first 5 minutes.” Others are less than forthcoming at first. Braunstein recalls one member who “didn’t want her name printed in materials because she didn’t want to be associated with ‘the mental health orchestra.’ She didn’t disclose her diagnosis for a long time; however, after playing with us for a few years she has now become an outspoken advocate about erasing stigma.”

Though a few members prefer to keep to themselves, many others become friends and socialize outside of Me2/. Braunstein describes rehearsals as “extremely social” and adds that the “positive energy is palpable.” He recalls one man who, after a few months with the orchestra, had reconnected with his long-estranged extended family because Me2/ “gave him the confidence and self-respect he needed.”

Another member considers each Me2/ rehearsal his “detox” from the remainder of the week. And for some members with a tendency to self-isolate, the orchestra “gets them out of the house and surrounded by supportive friends once a week.”

Braunstein currently lives in Burlington, Vermont, with his wife, Caroline Whiddon, a Me2/ cofounder who serves as Executive Director and also plays the French horn. They drive back and forth from Burlington to Boston each week, as the Boston orchestra rehearses every Monday and the Burlington one every Thursday.

“[Music] is a space to be in that is safe and beautiful… it has given my life meaning.”

The conductor’s future aspirations are “to continue to grow and learn as a musician and a human being. Me2/ is my project for life.” His life-project has grand plans in store: A Me2/ chapter has just launched in Portland, Oregon, and Braunstein anticipates another chapter launching this summer in Atlanta, Georgia. In three years, he hopes to have 20 affiliate programs in various cities. Ten years from now, he sees Me2/ having “affiliate programs nationwide, including orchestras and various ensembles.” He also envisions “hosting conferences where Me2/ members from various locations come together to rehearse and perform in massive events.”

Though some afflicted persons might view music as an escape from psychological duress, Braunstein prefers to think of music as “a space to be in that is safe and beautiful.” When asked about the effect of Me2/ on him personally, he concisely replies, “It has given my life meaning.”

Me2/ is open to ages 13-80+ and there’s no cost to participate. For further information, see the website.

Cancer The Good Fight

The Healing Power Of Music Medicine

When being sick in the hospital is getting kids down, this charity saves the day by kicking up the jams.

One of the most potent measures of healing doesn’t come from a person’s lab results, but from their level of happiness. Recognizing that treatment comes in many forms, there is a Portland, Oregon-based nonprofit that strives for just that: helping young hospital patients find joy in every challenging moment through the serendipity of live music.

After feeling helpless watching her daughter battle cancer, Regina Ellis wanted to create something she felt would be meaningful to her and her family. She founded the Children’s Cancer Association with which she launched a program called MyMusicRx. which brings well-known artists and top-quality, professional instruments into hospital rooms of critically-ill kids for what she calls “music medicine.” The organization believes that the power of bedside music can have a transformative effect not just on patients and their families, but on caregivers and artists as well.

Folks connected to Ellis on the phone to talk about the power of music in the face of illness, and surviving hardship with love.

Regina Ellis of the Children’s Cancer Association and

I’m excited to talk to you about MyMusicRx because I’ve admired what you have accomplished with this project. I would love to hear more of its backstory.

As you may know, the Children’s Cancer Association is the only organization of our kind in the nation working to position joy as a best practice in children’s hospitals.

The project started because of a very personal experience battling cancer with my eldest daughter, Alexandra. During that time, I was inspired by the way Alexandra oriented her head and heart towards life. Even though she had a very aggressive disease and spent half of her life in hospital, she really welcomed each day looking for joy in the corners of the hospital room experience, all amidst hardships such as high dose chemotherapy and other surgical procedures. She could always find what was beautiful in that moment.

After Alexandra died in 1995, we brought friends and family around our kitchen table to create an organization that helps kids reduce the stress and anxiety of pain through the power of joy. We were very thoughtful about creating something new in the world: we’re not a chapter organization or a franchise of a national model. We’re a local organization that has spread out across the nation based on need.

I understand that the MyMusicRx program serves the families who are in the hospital, as well as their children. Is your goal to speak directly to the experience of the entire family?

That is correct. We know from experience that being face-to-face with illness impacts the entire family. The whole family is gathered around the hospital room: not just the mom or dad, but the siblings as well. So our goal is that our programs help support and strengthen families, addressing the stress and anxiety not only of the child, but of the individuals around the child.

What was your experience when Alexandra was first diagnosed? How did it impact your family?

Obviously, it had a big impact. This was around 25 years ago, so I was in my late twenties, with two little children and my husband, Cliff. Luckily, we were very lucky to have a big Italian family around us, but cancer was still this unexpected guest in the middle of it. We were very fortunate to have lots of people around us, but it was also a difficult journey. We spent half of every month in the hospital, and the other half recovering and trying to live as much as possible.

Alex created a “To Live” list and wrote down over 30 things that she wanted to do. Things like “make a tie-dye t-shirt” or “bring snickerdoodles to the neighbors” or “have a fun pizza party.” We made a point of checking them all off, even though we were in the hospital.

Some of those simple things were really beautiful. The last thing on Alex’s list was: “Have a root beer float in one of those huge icy mugs.” She did that the day before she died.

So that was the mission, I think, we were given. To figure out a way to live alongside of cancer that gave us hope and allowed us to be a family. And after Alex died, to think about bringing that healing power of joy to other seriously ill kids around the country and the world. Because kids need more than medicine.

24 years ago, you need to remember there was no platform for music in hospitals. You might have some carolers during the holidays, or a special show when an artist came to the community, but otherwise there was nothing. We pioneered what that looked like.

In addition to holding bedside concerts, MyMusicRx brings instruments to patients.

Were you already thinking about MyMusicRx when you were in the hospital with Alexandra, or is this something that came later?

We saw the power of music in our own family over many years at the hospital. People brought their guitars and harmonicas and violins and voices, and we would gather around the hospital bed, playing, almost like you’re sitting around a campfire. The doctors, nurses, even other families would come in and join that. The power to transform these moments from ones about disease into ones about being human beings through the power of music was profound.

I’ve had similar experiences with my travels through healing and hospitals. I think the music idea is so powerful because it doesn’t take a lot to come into a room with an instrument and play for someone who is not feeling very well.

Twenty-some years ago, people told us: “This will never work. Are you kidding? We’re in a hospital here. Instruments aren’t going to help. There’s no way.” But little by little, we began to demonstrate that our program worked to reduce pain and stress.

Music is simple. We thought in terms of what a child or family needed. “Hey, this kid has a respiratory issue so we’re going to bring in an instrument that helps them with their breathing.” or “Hey, this kid needs to move their arm after surgery to strengthen their arm.”

MyMusicRx is the only program that extends a digital musical program that brings the bedside experience online, 24/7. It’s now available to about 7,500 kids and over 25 pediatric hospitals across the country. If kids want music at 2:00AM, we bring it to them then.

Was music a big part of your life before MyMusicRx?

I was certainly a fan. I wouldn’t call myself a musician but I’m just pretty damn good with a tambourine. *laughs* But I had the privilege of having incredible musicians provide the soundtrack to my life, so when the time came, it was easy to see the power that music could provide to deliver healing to kids in a different way.

We believe that the best things are the simplest things. Whether it is five or thirty minutes a day, we believe these small musical interactions are just critical for kids who are facing life-threatening or terminal illnesses.

That’s awesome. So how can people get involved? How can they help?

 Whether you’re a band member, a volunteer, or a patient, the best way to connect with us is to go to If there’s something in your community, we can connect you, and if not, we’ll help you start one. Just reach out! We’ll help in any way we can to share music and joy to people in need.

Disability The Good Fight Vision & Hearing Loss

Why Inclusivity Is Important, From Obama’s Champion Of Change

Deafblind activist Haben Girma explains why every company should design with inclusivity in mind.

Disability rights advocate Haben Girma has given a TEDx Talk, met with President Obama as a White House Champion of Change, and presented on the importance of inclusive design at Apple’s Worldwide Developers Conference (WWDC) 2016, helping iPhone and iPad developers understand why they should design with the disabled in mind.

She’s also the daughter of refugees and the first Deafblind person to graduate from Harvard Law School.

But don’t get carried away and call her an “inspiration” or say that “she’s overcome obstacles.” Girma shies away from that kind of language. Instead, as she writes on her website, “the biggest barriers exist not in the person, but in the physical, social, and digital environment.”

Haben Girma outside the U.S. Capitol with her trusty friend, Maxine.

Armed with her law degree and a spirit of determination, she’s fought those barriers for herself and others. She put pressure on digital library Scridb  until it made its collection of documents accessible to people using screen-reading software. She urged TEDx Talks to caption their videos for the Deaf and hard of hearing community. (They captioned her talk but many more videos remain inaccessible to those who cannot hear.) She’s also called out Uber drivers for failing to accept her service dog in violation of the Americans with Disabilities Act.  

In addition, Girma urges app developers to ensure that their technology is inclusive to people with disabilities. In her WWDC presentation, she compares it to constructing a building with an elevator from the start instead of adding one later.

In between trips around the world to present on disability rights and inclusion, Girma has tried surfing, rock-climbing and loves to salsa dance.

Folks talked with Girma via Skype chat (she uses a Braille keyboard or listens to VoiceOver at the high frequency she can hear) about why inclusive technology matters and how she’s spreading that message. The following excerpts have been edited for clarity and flow.

What misconceptions about being Deafblind do you encounter and how do you challenge them?

People assume my disability will prevent me from doing things like rock climbing or law school. I go ahead and do it anyways. Disability is not a barrier to overcome. Negative stereotypes and low expectations are the biggest barriers.

Do those negative stereotypes/low expectations ever make you feel lonely or isolated?

Over the years I have developed a strong community of friends who share my values.

Haben Girma and President Barack Obama during the Americans with Disabilities Act 25th Anniversary reception. (Official White House Photo by Pete Souza)

Why do you think inclusive technology is important, not just for people with disabilities but everyone?

We build better products when we plan for access from the start. Everyone gets a higher quality product. The business gains access to a bigger market. There are about 57 million Americans with disabilities, and 1.3 billion people with disabilities worldwide. Businesses also avoid the costs of litigation from ADA violations. A lot of people build products and think, “We’re just a startup. We’ll figure out accessibility later.” Trying to make something accessible after it has already been built is more expensive and time-consuming.

What do developers need to keep in mind, since the needs of people with different disabilities can be diverse?

Apple’s guidelines for iOS include access for Deaf individuals (captions), access for folks with mobility disabilities, and other disabilities. Apple has accessibility guidelines for developers. Android has guidelines, too. For websites there is the Web Content Accessibility Guidelines.

So, the information is there but the gap is in implementation and knowledge?


Haben Girma enjoys her first surfing lesson in San Diego.

What do you have planned for 2017? More work on inclusive technology?

Yes, this year I have many presentations on disability rights/inclusion. Most in the US. Some abroad, too.

What is your favorite country that you’ve visited so far?

Several years ago I visited Spain and loved it. Great food, great people, and great salsa.

Haben Girma plays with her German Shepherd, Maxine, at the Berkley Marina.

How did you get into salsa dancing?  

A blind dance instructor gave me my first salsa lesson. I have been dancing ever since.

Is there anything else you’d like readers to know about your work or inclusivity in general?

Disability adds value to our lives. We all benefit when people with diverse experiences have a voice at the table. Let’s all work to ensure that our communities are inclusive to everyone.


The Good Fight

Giving Mexico New Wheels and Limbs

In Arizona, a group of paraplegics and amputees work to provide affordable wheelchairs and prosthetic limbs to those south of the border.

It’s a sad but true fact that incidents of disability and chronic illness are higher amongst those who can least afford to not be healthy. This is as true in Mexico as it is in the United States, where as many as 2% of the population – or over 2 million people – live with a disability, most of them well below the poverty line. And how much help does the government of the 11th most populated country on Earth provide?

To answer that question, William Neubauer, a retired surgeon living in an old cowboy ranch near the Arizona-Mexico border, likes to tell a gruesome story. Running up the waist of Central America from Venezuela, there is an ad hoc network of trains used by migrants to cheaply and quickly reach the U.S. where work is more plentiful. But it’s not a safe trip. Colloquially, this network is known as El tren de la muerte, or The Death Train, and travelers don’t buy tickets. They ride on top, where they often fall off, plummeting beneath the wheels of the train.

Recently, Neubauer met a man who had lost his legs on the Death Train, 30 years prior. Yet in these three decades, this man had never once been helped by the Mexican government. “Here’s this guy, sitting there in this terrible rickety wheelchair,” remembers Neubauer. “He’s unable to work, Mexico didn’t provide him with anything.”

A worker in ARSOBO's wheelchair workchops creates the frame for a new chair.

A worker in ARSOBO’s wheelchair workchops creates the frame for a new chair.

So Neubauer did what he’s done dozens of times before. He gave the man new legs. Prosthetic legs, to be more precise. Along with wheelchairs and hearing aids, Neubauer distributes affordable prosthetics as part of ARSOBO, an American non-profit that crosses the Arizona-Sonora border to help underprivileged Mexicans living with disabilities.

The problem is huge. According to ARSOBO, while 2% of all Mexicans are disabled, a full half of that number – or 11 million people – are in need of a wheelchair. An additional 786,100 amputees need costly prosthetics, and 630,000 more live with serious hearing loss. But getting impoverished Mexicans the devices they need is Herculean.

Take wheelchairs, for example. In America, an entry-level wheelchair costs around $2,000. For those living on the bottom rung of Mexican society, that might as well be $200,000, and even if they could afford it, the wheelchair design is completely unsuited for the realities of day-to-day life. Their tiny front wheels get stuck in the cracks and drainage grates that are ubiquitous through Mexican cities. The wheels, meanwhile, can not easily traverse Mexico’s ubiquitous unpaved roads.

Another ARSOBO worker helps craft a colorful prosthetic leg.

Another ARSOBO worker helps craft a colorful prosthetic leg.

ARSOBO’s answer to this problem? Design a better wheelchair. Instead of distributing off-the-shelf wheelchairs, they pair those in need with a specially designed wheelchair created by Ralf Hotchkiss. A wheelchair-rider himself, Hotchkiss’s design is called the RoughRider, a super-durable chair with a 2mm steel frame that uses mountain biking wheels and extra-wide front wheels to allow riders to easily traverse rugged conditions. “They’re basically unbreakable,” Neubauer brags, but if they do break? They use simple bicycle wheels, meaning they can be repaired in any small town bike shop for cheap.

Instead of costing $2,000 to make, ARSOBO can produce a RoughRider wheelchair for less than $300. Even that, though, is subsidized by ARSOBO’s state-side donors. The end cost to the rider-in-need, Neubauer says, is whatever they can afford to pay, even if it’s as little as a few dollars. (“My job is to make this very bad business plan work,” laughs Neubauer.) But they have to pay something. “Buy-in is important. If you just give someone something, they don’t value it as much. They can’t take pride in it the same way.”

This concept of buy-in is one that’s important to ARSOBO all around. Like their wheelchairs, ARSOBO expects the people who need their prosthetics (which are even more expensive to manufacture and custom-fit) and hearing aids to pay what they can. But ARSOBO itself also buys into the community of paraplegics and amputees it supports. All ARSOBO chairs and prosthetics are manufactured by native Mexicans who are in wheelchairs or amputees themselves. Asked why ARSOBO makes a point of hiring these employees, Neubauer says that it’s only in part because the best person to mod a wheelchair or a prosthetic limb is someone with the experience of living one. It’s also a simple issue of humanitarianism. “In Mexico, if you have a disability, it’s incredibly hard to find employment,” he says. “If we didn’t employ our workers, they just wouldn’t be employed.”

One of the many people ARSOBO has helped.

One of the many people ARSOBO has helped.

Asked if he finds being surrounded by such poverty and disability depressing, Neubauer sounds like he thinks I must be crazy. “Are you kidding?” he scoffs. “Before I did this, I was a surgeon. I did over 25,000 operations, and I was proud of everyone, but right now, on a one-by-one basis, this is easily the best thing I’ve ever done.” The chance to make a positive impact on a beautiful but disenfranchised person, to help them reclaim their life, is simply without parallel.

Listening to Neubauer’s stories about the people he’s helped, it’s easy to see what he means. He talks about a little girl who was put into an orphanage because of her debilitating cerebral palsy; it was only after ARSOBO provided her with a wheelchair that she was able to be adopted, and now lives in a loving household with her grandparents, who couldn’t previously care for her because of her extreme mobility issues. He talks about a little boy born without arms and legs, whose biggest complaint about his ARSOBO-provided prosthetics was that he wasn’t growing along with his friends… until ARSOBO made that happen too. And he speaks about a gorgeous young 20-year-old woman who, after being bitten by a tick, lost both arms and legs to sepsis. Today, she walks around on computer-controlled prosthetics worth a quarter-million dollars, thanks to ARSOBO.

“Who would be depressed to take part in that?”