Erin moore was a stay-at-home mom who became a leading activist when her son Drew was diagnosed with Cystic Fibrosis at birth. Now, you can find her as an ePatient Advisor broadcasted all over the internet on her blog–66 Roses. Where she expresses her views as an advocate, a researcher and a “maker”. Why does her blog have that name? Go there and find out.

Erin moore was a stay-at-home mom who became a leading activist when her son Drew was diagnosed with Cystic Fibrosis at birth. Now, you can find her as an ePatient Advisor broadcasted all over the internet on her blog–66 Roses. Where she expresses her views as an advocate, a researcher and a “maker”. Why does her blog have that name? Go there and find out.

ERIN MOORE

CHRISTINE BECHTEL is the mix of policy professional and patient advocate that we need in DC. In the mid-2000s she moved from industry associations to the National Partnership for Women & Families and catapulted its work on health quality, health reform, patient empowerment and data access into the forefront of the policy arena. She spent 2 terms as a consumer representative on the federal Health IT Policy Committee and spearheaded what became the GetMyHealthData campaign.

CHRISTINE BECHTEL is the mix of policy professional and patient advocate that we need in DC. In the mid-2000s she moved from industry associations to the National Partnership for Women & Families and catapulted its work on health quality, health reform, patient empowerment and data access into the forefront of the policy arena. She spent 2 terms as a consumer representative on the federal Health IT Policy Committee and spearheaded what became the GetMyHealthData campaign.

CHRISTINE BECHTEL

Hugo campos is a fierce advocate for the right to the most personal of data--that generated by the pacemaker keeping him alive. He founded the ICD user group, is Patient Chair of the pSCANNER project, and a White House Champion of Change for Precision Medicine. But probably his greatest achievement is his ongoing fight to get Medtronic to let him directly access the data coming from inside his chest.

Hugo campos is a fierce advocate for the right to the most personal of data--that generated by the pacemaker keeping him alive. He founded the ICD user group, is Patient Chair of the pSCANNER project, and a White House Champion of Change for Precision Medicine. But probably his greatest achievement is his ongoing fight to get Medtronic to let him directly access the data coming from inside his chest.

HUGO CAMPOS

Donna Cryer has channeled her personal experience as an IBD and liver transplant patient into a distinguished career in professional advocacy spanning two decades. She was the first patient to lead the American Liver Foundation in its thirty-six year history, serving as Chair of the Board before stepping in as interim CEO. And yes, she was a wonderful keynote at Health 2.0 in 2014.

Donna Cryer has channeled her personal experience as an IBD and liver transplant patient into a distinguished career in professional advocacy spanning two decades. She was the first patient to lead the American Liver Foundation in its thirty-six year history, serving as Chair of the Board before stepping in as interim CEO. And yes, she was a wonderful keynote at Health 2.0 in 2014.

DONNA CRYER

After her children were diagnosed with the rare genetic condition PXE, Sharon Terry founded PXE International and despite having no scientific training got directly into bench work in the lab, eventually discovering the gene responsible for the condition, and authoring over 130 scientific papers. She also put together a cohort of 4,000 sufferers who she turned into citizen scientists like her. In the late 90s she JOINED a wider coalition called the Genetic Alliance, WHERE SHE'S NOW ceo. sHE works closely with PCORI who fund a project on the Peer platform (Platform for Engaging Everyone Responsibly) registry, information distribution, and privacy, & protection system. WHICH SHE BUILT. Somehow Sharon also manages to go paragliding quite often.

After her children were diagnosed with the rare genetic condition PXE, Sharon Terry founded PXE International and despite having no scientific training got directly into bench work in the lab, eventually discovering the gene responsible for the condition, and authoring over 130 scientific papers. She also put together a cohort of 4,000 sufferers who she turned into citizen scientists like her. In the late 90s she JOINED a wider coalition called the Genetic Alliance, WHERE SHE'S NOW ceo. sHE works closely with PCORI who fund a project on the Peer platform (Platform for Engaging Everyone Responsibly) registry, information distribution, and privacy, & protection system. WHICH SHE BUILT. Somehow Sharon also manages to go paragliding quite often.

SHARON TERRY

SIX DAYS AFTER HER HUSBAND DIED OF KIDNEY CANCER IN 2009--AFTER SHOCKING TREATMENT IN DC HOSPITALS--Regina Holliday kicked off her career as a patient activist with a single mural, “73 Cents”, on the side of a gas station. Starting from ground zero she began a patient-led data access movement through art. Regina first came to Health 2.0 in 2010 and has been a regular since then, as well as spreading her message across the globe. We have her art in her office, but more importantly her art is on the backs of more than 430 jackets in the Walking Gallery--a moving (pun intended) tribute to patient stories seen at conferences across the world, including the cinderblocks patient conference she runs.

SIX DAYS AFTER HER HUSBAND DIED OF KIDNEY CANCER IN 2009--AFTER SHOCKING TREATMENT IN DC HOSPITALS--Regina Holliday kicked off her career as a patient activist with a single mural, “73 Cents”, on the side of a gas station. Starting from ground zero she began a patient-led data access movement through art. Regina first came to Health 2.0 in 2010 and has been a regular since then, as well as spreading her message across the globe. We have her art in her office, but more importantly her art is on the backs of more than 430 jackets in the Walking Gallery--a moving (pun intended) tribute to patient stories seen at conferences across the world, including the cinderblocks patient conference she runs.

REGINA HOLLIDAY

 MIRIAM KAUFMAN’s hot pink hair make an impressive statement in the Health tech world, but it’s her research, books and articles for teens and their parents that really make the big impact. The paediatrician and adolescent health specialist at SickKids is also the founder of the MyLupus App, the Good 2 go Transition Program at SickKids, and the designer for MyHealth Passport.

 MIRIAM KAUFMAN’s hot pink hair make an impressive statement in the Health tech world, but it’s her research, books and articles for teens and their parents that really make the big impact. The paediatrician and adolescent health specialist at SickKids is also the founder of the MyLupus App, the Good 2 go Transition Program at SickKids, and the designer for MyHealth Passport.

MIRIAM KAUFMAN

A routine X-ray for shoulder pain turned Dave DeBronkart into “e-Patient Dave”. Upon discovering a mass which turned out to be metastasized kidney cancer, Dave’s GP Danny Sands directed him to  ACOR (a collective of cancer listservs) set up by Gilles Frydman. By “Googling his arse off”, Dave became an activist patient and then hit the big time by importing his data from Beth Israel to Google Health--which hit the front page of the boston globe and became a big topic at a 2009 Health 2.0 conference where Dave in the balcony literally bestowed his wisdom down to the crowd below. Since then he’s spoken at more than 500 conferences, been one of the forces behind the Society for Participatory Medicine, and of course created the meme “Gimme my DaM data”

A routine X-ray for shoulder pain turned Dave DeBronkart into “e-Patient Dave”. Upon discovering a mass which turned out to be metastasized kidney cancer, Dave’s GP Danny Sands directed him to  ACOR (a collective of cancer listservs) set up by Gilles Frydman. By “Googling his arse off”, Dave became an activist patient and then hit the big time by importing his data from Beth Israel to Google Health--which hit the front page of the boston globe and became a big topic at a 2009 Health 2.0 conference where Dave in the balcony literally bestowed his wisdom down to the crowd below. Since then he’s spoken at more than 500 conferences, been one of the forces behind the Society for Participatory Medicine, and of course created the meme “Gimme my DaM data

DAVE DEBRONKART

Jess Jacobs was a brilliant health policy wonk at ONC, FDA and most recently Aetna’s Innovation Labs. Jess suffered from POTS and Ehlers-Danlos syndrome, and that incredibly rare combination made her known as #UnicornJess, but also made her a massive problem for many Washington DC’s hospitals and clinicians. She recorded and analyzed her less than impressive care in her blog and often in real time on Twitter. To the great distress of our community, Jess died in August at the too young age of 29.

Jess Jacobs was a brilliant health policy wonk at ONC, FDA and most recently Aetna’s Innovation Labs. Jess suffered from POTS and Ehlers-Danlos syndrome, and that incredibly rare combination made her known as #UnicornJess, but also made her a massive problem for many Washington DC’s hospitals and clinicians. She recorded and analyzed her less than impressive care in her blog and often in real time on Twitter. To the great distress of our community, Jess died in August at the too young age of 29.

JESS JACOBS

Shannon Des Roches Rosa started her blog Squidalicious in 2003 under the pseudonym Squid Rosenberg so that she could grapple with her emotional stress following her son’s autism diagnosis. She has since become one of the most outspoken advocates for autistic kids and neurodiversity as a co-editor and contributor to the book, Thinking Person's Guide to Autism. Her writing and interviews have been featured at Huffington Post Parents, io9.com, and by the Bill and Melinda Gates Foundation. Meanwhile, Shannon’s son Leo is now a happy teenager with a huge support system through Shannon’s blog.

Shannon Des Roches Rosa started her blog Squidalicious in 2003 under the pseudonym Squid Rosenberg so that she could grapple with her emotional stress following her son’s autism diagnosis. She has since become one of the most outspoken advocates for autistic kids and neurodiversity as a co-editor and contributor to the book, Thinking Person's Guide to Autism. Her writing and interviews have been featured at Huffington Post Parents, io9.com, and by the Bill and Melinda Gates Foundation. Meanwhile, Shannon’s son Leo is now a happy teenager with a huge support system through Shannon’s blog.

SHANNON DES ROCHES ROSA


Previous Top 25 Nominees

DIAGNOSED WITH BILATERAL RETINOBLASTOMA AT 5 MONTHS OLD, By the time Julia Hallisy’s daughter Kate was ten, she had fought the cancer five times.  Kate fought a very tough battle with cancer until February 2000- Julia and their family fought with her. After the tragedy, Julia decided to move forward with her kids and push through the pain. Her book, The Empowered Patient was the vehicle that helped her channel the loss into actions that would honor Kate’s memory. And Julia didn’t stop there, she’s been heavily involved in patient safety efforts, legislation for HMO reform, and in working to pass a Patients’ Bill of Rights to improve patient safety. She made a commendable decision not to be consumed by anger, despair or hopelessness and spreads this message as far as she can.

DIAGNOSED WITH BILATERAL RETINOBLASTOMA AT 5 MONTHS OLD, By the time Julia Hallisy’s daughter Kate was ten, she had fought the cancer five times.  Kate fought a very tough battle with cancer until February 2000- Julia and their family fought with her. After the tragedy, Julia decided to move forward with her kids and push through the pain. Her book, The Empowered Patient was the vehicle that helped her channel the loss into actions that would honor Kate’s memory. And Julia didn’t stop there, she’s been heavily involved in patient safety efforts, legislation for HMO reform, and in working to pass a Patients’ Bill of Rights to improve patient safety. She made a commendable decision not to be consumed by anger, despair or hopelessness and spreads this message as far as she can.

JULIA HALLISY

In 2013, former athlete Alan Brewington’s life changed after a fall rock-climbing. For six years after that, Alan spent is time in different surgeries with no pain reduction and finally found out that he had rheumatoid arthritis. Only 5% of people in their 30’s experience this, and Alan often jokes that he won the lottery when he shares his stories on chronic pain. After realizing that the pain was going to be constant for the rest of his life, Alan found his remedy online through support groups. Now, through his own blog http://www.paintalks.com/ Alan hopes to inspire others to work around the pain. Alan spends most of his time outdoors skiing, running, or biking- which is definitely pretty unheard of for someone with his condition!

In 2013, former athlete Alan Brewington’s life changed after a fall rock-climbing. For six years after that, Alan spent is time in different surgeries with no pain reduction and finally found out that he had rheumatoid arthritis. Only 5% of people in their 30’s experience this, and Alan often jokes that he won the lottery when he shares his stories on chronic pain. After realizing that the pain was going to be constant for the rest of his life, Alan found his remedy online through support groups. Now, through his own blog http://www.paintalks.com/ Alan hopes to inspire others to work around the pain. Alan spends most of his time outdoors skiing, running, or biking- which is definitely pretty unheard of for someone with his condition!

ALAN BREWINGTON

For the past twelve years Cynthia Bens has worked to inform federal policymakers and educate the public on a variety of issues. Her efforts have centered on the formulation of policies to expedite the development of interventions to treat and prevent many debilitating age-related diseases; to remove barriers to access for needed treatments and therapies; and to improve the coordination and quality of care seniors receive. She’s a force to be reckoned with, which is why she’s the only patient stakeholder from the aging community consistently advocating before the U.S. Food and Drug Administration and the U.S. Congress. Cynthia has played a decisive role in bring policies to action and rightfully stands as the Vice President of Public Policy at Alliance for Aging Research.

For the past twelve years Cynthia Bens has worked to inform federal policymakers and educate the public on a variety of issues. Her efforts have centered on the formulation of policies to expedite the development of interventions to treat and prevent many debilitating age-related diseases; to remove barriers to access for needed treatments and therapies; and to improve the coordination and quality of care seniors receive. She’s a force to be reckoned with, which is why she’s the only patient stakeholder from the aging community consistently advocating before the U.S. Food and Drug Administration and the U.S. Congress. Cynthia has played a decisive role in bring policies to action and rightfully stands as the Vice President of Public Policy at Alliance for Aging Research.

CYNTHIA BENS

Helen Haskell became an activist after the passing of her son Lewis in the 2000’s. With the belief that she was not given enough information on his elective surgery for a sunken breastbone, she became president of the patient safety organization, Mothers Against Medical Error and now focuses on empowering patients and their families to make sure the same experience does not happen to them.

Helen Haskell became an activist after the passing of her son Lewis in the 2000’s. With the belief that she was not given enough information on his elective surgery for a sunken breastbone, she became president of the patient safety organization, Mothers Against Medical Error and now focuses on empowering patients and their families to make sure the same experience does not happen to them.

HELEN HASKELL

After being diagnosed with cancer at the young age of 26, Jonny Imerman found himself in several support groups with people who were much older than him. This made him realize the importance of being able to connect with someone while dealing with the immense physical and mental difficulty in being diagnosed with a terminal illness. After fighting his own battles with cancer, he founded http://imermanangels.org/. The organization uses the internet to pair cancer fighters with cancer survivors that are the same age and gender, facing the same type of cancer with one another. As a survivor himself, Jonny wholly believes the importance of psychosocial support and hopes that this will ease the recovery process for many in the same position that he was in.

After being diagnosed with cancer at the young age of 26, Jonny Imerman found himself in several support groups with people who were much older than him. This made him realize the importance of being able to connect with someone while dealing with the immense physical and mental difficulty in being diagnosed with a terminal illness. After fighting his own battles with cancer, he founded http://imermanangels.org/. The organization uses the internet to pair cancer fighters with cancer survivors that are the same age and gender, facing the same type of cancer with one another. As a survivor himself, Jonny wholly believes the importance of psychosocial support and hopes that this will ease the recovery process for many in the same position that he was in.

JONNY IMERMAN

Kym martin is a Hodgkin's lymphoma, melanoma (2x) and breast cancer survivor, with three recurrences caused by previous radiation treatment. As she told the Health 2.0 audience, Kym manages her health by blending a combination of traditional and alternative therapies and is a keen tester of technologies, and, with her “360 Degree Insights” service, is an adviser to tech companies. She also found time to Co-Chair the Patient Experience Council affiliated with WEDI, and was named a “Disruptive Woman to Watch” in 2015

Kym martin is a Hodgkin's lymphoma, melanoma (2x) and breast cancer survivor, with three recurrences caused by previous radiation treatment. As she told the Health 2.0 audience, Kym manages her health by blending a combination of traditional and alternative therapies and is a keen tester of technologies, and, with her “360 Degree Insights” service, is an adviser to tech companies. She also found time to Co-Chair the Patient Experience Council affiliated with WEDI, and was named a “Disruptive Woman to Watch” in 2015

KYM MARTIN

Mightymouth Casey (yes that’s her Twitter handle and her attitude) went through the experience of her parents’ illness in the 90s and then her own cancer diagnosis in the 2000s. That turned her from being a field engineer for news shows to being a fierce patient activist. On her blog, in her speeches and in person, Casey Quinlan is not quiet. Oh and just this month the NY Times printed a picture of her chest, which is tattooed with a QR code linking to her health records--Just in case health care providers can’t get the message from her mouth!

Mightymouth Casey (yes that’s her Twitter handle and her attitude) went through the experience of her parents’ illness in the 90s and then her own cancer diagnosis in the 2000s. That turned her from being a field engineer for news shows to being a fierce patient activist. On her blog, in her speeches and in person, Casey Quinlan is not quiet. Oh and just this month the NY Times printed a picture of her chest, which is tattooed with a QR code linking to her health records--Just in case health care providers can’t get the message from her mouth!

CASEY QUINLAN

You’d think that a second finalist connected to the National Partnership for Women & Families means we’re impressed by their work--and you’d be right. ERIN MACKAY is the associate director of health information technology programs which mean she runs the Consumer Partnership for eHealth, coordinates the GetMyHealthData campaign, and is not only a fierce patient advocate, but is a walking knowlege base of Federal (and more) regulations impacting patients access to data, and to care.

You’d think that a second finalist connected to the National Partnership for Women & Families means we’re impressed by their work--and you’d be right. ERIN MACKAY is the associate director of health information technology programs which mean she runs the Consumer Partnership for eHealth, coordinates the GetMyHealthData campaign, and is not only a fierce patient advocate, but is a walking knowlege base of Federal (and more) regulations impacting patients access to data, and to care.

ERIN MACKAY

Linnea Olson is another artist, and self proclaimed “terminal optimist” who has been living with stage 4 lung cancer for over a decade. She says “everything is fun.” In 2008, Linnea enrolled in a clinical trial to treat her cancer, and started her blog Outliving Cancer as a way to spread a sense of hope for those with similar conditions. Linnea lives in an artist community in Massachusetts. All three of her kids are now adults and the youngest wants to be a cancer researcher.

Linnea Olson is another artist, and self proclaimed “terminal optimist” who has been living with stage 4 lung cancer for over a decade. She says “everything is fun.” In 2008, Linnea enrolled in a clinical trial to treat her cancer, and started her blog Outliving Cancer as a way to spread a sense of hope for those with similar conditions. Linnea lives in an artist community in Massachusetts. All three of her kids are now adults and the youngest wants to be a cancer researcher.

LINNEA OLSON