Strategic Advisory Board Members: Health Ideation Division

 

We’re thrilled to introduce you to our Strategic Advisory Board members.  They are strong leaders in the global healthcare and patient advocacy communities…and they’re a key element to the Health Ideation Division.  It is our objective to harness their skills, knowledge and experience to drive our Patient Included projects forward in practical ways for cancer patients.  
Please take a moment to read their bios below.

The Strategic Advisory Team

Jonathan Agin

Jonathan Eric Agin, JD, is the Executive Director for the Max Cure Foundation and the co-founder of the Children’s Cancer Therapy Development Institute, a non-profit childhood cancer research biotech located in Beaverton, OR.  He was appointed to and elected to sit as a Patient Advocate on the National Cancer Institute Brain Malignancy Steering Committee.  He is also the Cancer Knowledge Network (Canadian Oncology Journal) Childhood Cancer Awareness and Advocacy Section Co-Editor and frequent contributor to the Huffington Post.  Jonathan is an attorney by training and a former trial lawyer from Washington, DC.  He is one of the most recognized names in the childhood cancer community.  He has testified before the United States Congress on issues of identity theft impacting the childhood cancer community, which ultimately led to the introduction of bipartisan legislation named after his daughter Alexis (HR 2720, The Alexis Agin Identity Theft Protection Act of 2013).  This legislation was later enacted into law as part of the overall budget deal of 2013.  Jonathan’s legislative advocacy has proven effective in the passage of several bills in a climate of congressional stagnation and he continues to work closely with members of the community and beyond on legislative initiatives impacting the rare disease community.  He has provided public comment before the FDA pedODAC Committee on the topic of biopsy in children with DIPG (an inoperable and almost universally fatal pediatric brain tumor).  Jonathan became involved in the childhood cancer community following the diagnosis of his daughter Alexis at the age of two with DIPG  in April 2008.  Alexis battled heroically for thirty-three months until January 14, 2011.  Jonathan frequently interacts with members of Congress and their staff, the White House, as well as various regulatory agencies and other cancer organizations in an effort to improve the plight of children with cancer.  He is an original founding steering council member of the DIPG Collaborative.  Jonathan resides in Falls Church, Virginia and has four children, Alexis (1-31-06 to 1-14-11), Gabriel age 9, Trevor age 5 and Kylie 4 years.  Jonathan maintains his own website for his advocacy activities: www.jonathanagin.com and can be followed on Twitter @jonathanagin.  In his spare time he also competes in endurance events like running marathons and triathlons.​​

Ronny Allan

Ronny Allan is an eight year survivor of metastatic Neuroendocrine Cancer.  He resides in Hampshire UK with his wife.  He has a son and daughter and four grandsons.  He enjoys family life and travel.

Ronny blogs about cancer and his survivorship experience at his website https://ronnyallan.com/ which broke through half a million hits in 2018. He is also a strong global advocate for Neuroendocrine Cancer awareness and his associated Facebook site has attracted 6000 followers from across the world.

His blog has been featured by several organizations including CKN, Cure Magazine and Macmillan Cancer Support. He was a 2016 Winner in Best in Show Community in the WEGO Health Activist Awards and is listed as a finalist in 5 other categories in 2016/17.  Ronny is a regular speaker telling his patient story across Europe to pharmaceutical companies involved in Neuroendocrine Cancer therapies, to groups of patients and medical professionals.

Ronny is passionate about modernising Neuroendocrine Cancer awareness and taking it to new audiences. He’s also a big believer in the patients included concept and is accredited with Patient Included status.

Gregory Aune

Dr. Gregory J. Aune is the Stephanie Edlund Distinguished Professor of Pediatric Cancer Research and a St. Baldrick’s Foundation Scholar.  His experience in pediatric cancer spans over 27 years and encompasses his own patient experiences, research in experimental therapeutics, clinical care of pediatric oncology patients, and childhood cancer advocacy.  His interest in pediatric oncology began at age 16, when he was diagnosed with Hodgkin’s lymphoma.  While fortunate to survive, the experiences he encountered as a patient initiated a path towards a research and clinical career aimed at developing less toxic chemotherapy regimens.  His experience as a long-term survivor included open-heart surgery at age 35 to replace his aortic valve and bypass three blocked coronary arteries that were damaged by his teenage cancer therapies.  This life-changing event initiated his research interest in cardiac disease.  His training to become a successful physician scientist and pediatric oncologist has included time spent at some of the most well-respected oncology institutions in the United States including, M.D. Anderson Cancer Center, the National Cancer Institute, and Johns Hopkins Hospital.

Dr. Aune is a national leader in childhood cancer advocacy efforts.  In San Antonio, he has been a leader in local fundraising and awareness efforts.   Since 2010, he has spearheaded efforts by the St. Baldrick’s Foundation and For the Kids Dance Marathon at the University of Texas San Antonio that have raised over $830,000 for childhood cancer patients and research efforts.  In September 2014, his appointment to the National Cancer Institute Council of Research Advocates (NCRA) was announced by NCI Director Dr. Harold Varmus at a White House briefingon childhood cancer.

In addition, Dr. Aune is a policy advisor for the National Coalition for Cancer Survivorship, serves on the Board of Directors of the American Childhood Cancer Organization, is a member of the St. Baldrick’s Foundation National Advocacy Committee, and serves on the scientific advisory board for the Canines-N-Kids foundation.

In May 2015, Dr. Aune addressed the 68th World Health Assembly in Geneva, Switzerland and called on the World Health Organization to make childhood cancer a top global health priority.

Justin Birckbichler

Justin Birckbichler is a men’s health activist, testicular cancer survivor, and the founder of aBallsySenseofTumor.com. From being diagnosed in November 2016 at the age of 25, to finishing chemo in January 2017, to being cleared in remission in March, he has been passionate about sharing his story to spread awareness about testicular cancer and promote open conversation about men’s health.

In addition to his work through ABSOT, Justin’s writing has appeared in Cure Magazine, I Had Cancer, The Mighty, The Good Men Project, Stupid Cancer, and more. His work with awareness of men’s health has been featured by Healthline, Ball Boys, and various other organizations. In 2017, ABSOT won an award for the Best Advocacy and Awareness Cancer Blog in 2017 and Justin was recognized as one of 15 People Who Raised Cancer Awareness in 2017. He was also one of the selected attendees of HealtheVoices18.

In addition to his role on this board, Justin also serves as a board member of the Young Adult Cancer Survivor Advisory Board for Lacuna Loft.

Outside of the “cancer world,” Justin is a fourth grade teacher, amateur chef, technology aficionado and avid reader. He lives in Fredericksburg, VA with his wife, cat, and dog.

Connect with him on Instagram (@aballsysenseoftumor), on Twitter (@absotTC), on Facebook (Facebook.com/aballsysenseoftumor), on YouTube, or via email (justin@aballsysenseoftumor.com).​

Susie Brain

Susie is a breast cancer survivor and dedicated patient advocate. Over the past 12 years she has worked with both local and national advocacy organizations and serves on several research and survivorship committees involving government, academic, and non-profit organizations. She is an informed and well-trained research advocate having gradated from the National Breast Cancer Coalition’s cancer science training program “Project LEAD Institute”, and their advanced courses: “Clinical Trials Project LEAD” and “Quality Care Project LEAD”. She has served as a Stakeholder Reviewer for the American Cancer Society, as a Consumer Grant Reviewer for the DOD Breast Cancer Research Program, as Komen “Advocate in Science” reviewing grants for Susan G. Komen for the Cure®, and as an Advocate Observer for the California Breast Cancer Research Program.

She has been a research advocate with the UCSF Breast Science Advocacy Core (formally SPORE) since 2009. She currently serves as an advocate on the Investigators and Quality of Life Working Groups for the I-SPY 2 Clinical Trial; as an advocate on the Consumer and Community Advisory Committee of the ATHENA Breast Health Network, a collaboration of the five University of California Medical Centers; and as an advocate stakeholder on the PCORI-funded WISDOM Study. Susie also serves as a Patient Advisor for BreastCancerTrials.org. At the Stanford Cancer Institute, Susie is a patient advocate/community member on the Scientific Review Committee, which reviews all new cancer-related clinical trials proposing involvement of cancer patients at Stanford; she is also a member of the Clinical Trials Advisory Committee.

As an American Cancer Society Reach-to-Recovery peer mentor volunteer and as a Helpline Volunteer with Living Beyond Breast Cancer, Susie provides direct support, resources and hope to women newly diagnosed with breast cancer. She is also able to share patient perspectives and quality of life concerns with scientists applying for research funding or who are planning clinical trials. Susie received a B.Sc. in Biology and a post-graduate teaching credential from the University of Wales, Swansea, Great Britain.

Deborah Cornwall

A legislative advocate and speaker with the American Cancer Society’s Cancer Action Network, Deborah J. Cornwall is the author of Things I Wish I’d Known: Cancer Caregivers Speak Out and Things I Wish I’d Known: Cancer and Kids.

Vickie Forster

Dr Vicky Forster is a postdoctoral cancer research scientist with interests in pediatric cancers and the long- and short-term side effects of treatment.  She’s also a 23-year survivor of childhood leukaemia and an advocate for childhood cancer survivorship and patient involvement in research.  She currently works at The Hospital for Sick Children (SickKids) on rare pediatric brain tumours.  She is passionate about science communication and keeping the whole pediatric oncology community up to date with her research progress.

 

 

 

 

Kate Houghton

Kate Yglesias Houghton is the President & CEO of Critical Mass: The Young Adult Cancer Alliance.  Kate is a dedicated policy professional with more than 10 years of experience in federal policy and elections.  Her experience has developed a unique set of leadership qualities that have successfully brought the best people together – no matter their background – to solve complex problems and improve the lives of Americans.

Prior to joining Critical Mass, Kate served a senior staff member to a Chief Deputy Whip in the U.S. House of Representatives and leader of the national Democratic Party.  While in the House, Kate was engaged in message development and passage of the Affordable Care Act including adding language to create a federal program to study and educate providers about the risk of breast cancer in young women (EARLY Act of 2010.) In 2011, Kate was asked to serve on President Barack Obama’s re-election campaign and traveled to more than 80 cities in the United States over 10 months promoting the benefits of the Affordable Care Act.

While on the campaign trail, Kate was diagnosed with acute myeloid leukemia (AML) at just 27 years old.  She successfully completed her treatment over four months at Johns Hopkins Hospital in Baltimore, MD before heading back out on the campaign trail.  Kate has worked on three presidential elections, a dozen House elections, and advised countless local level candidates and campaigns throughout her career.  Most recently, she served as Director of the Chair’s Office at the Democratic National Committee. 

In 2009, Kate founded the Congressional Women’s Softball Game, an annual event that brings together women of both political parties who play together on one team against the women of the Washington, DC press corp.  The Game raised more than $850,000 for young women battling breast cancer during Kate’s tenure as president. 

In 2013, Kate found herself to be “too young” to connect her personal story with federal policy advocacy work.  Then she connected with Critical Mass and was finally able to lend her unique personal and professional experience to advance the care and treatment of adolescents and young adults at the federal level.  Kate was asked to formally join Critical Mass in 2016. 

As President & CEO, Kate is focused full-time on ensuring the unique needs of Americans diagnosed with cancer between 15 and 39 years of age are fully recognized by decision makers from hospital administrators to policymakers in Washington, DC.  Currently, Kate is spearheading a move to pass legislation, which she authored, to allow any American battling cancer to pause interest from accruing on student loans while in active treatment.

Deborah Maskens

Deborah Maskens, is a kidney cancer patient and patient advocate. Her current roles include Vice-Chair of the International Kidney Cancer Coalition (IKCC). Along with another patient, she Co-Founded Kidney Cancer Canada and played an active role for 10 years. During this time she focused on advocacy, health technology assessment, and patient navigation.

Deb is currently a Patient Advocate on the NCI Renal Task Force. She is a also a Patient Panel member of the HTAi Patient and Citizen Involvement group (HTAi.org) and Co-Lead of the CanCertainty Coalition campaign of 35 cancer organizations advocating for health policy change across Canada (CanCertainty.ca).

In 2016, Deb was awarded the Canadian Governor General’s Meritorious Service Medal, Canada’s highest award for her dedication and professionalism in patient advocacy and volunteer service.

Deb is a frequent speaker at national and international cancer meetings where she provides the patient voice perspective, along with sound advocacy knowledge and experience.

Robin McGee

Dr. Robin McGee (The Cancer Olympics, Twitter @TCOrobin), is a Registered Clinical Psychologist, mother, wife, educator and friend. Living in Nova Scotia, she has worked in health and education settings for over 30 years.  She has been very active in advocacy, mentorship, and fundraising on behalf of cancer patients. In particular, she has been involved in provincial, national, and international initiatives aimed at improving standards of cancer care. She has been awarded the Canadian Cancer Society’s highest honour, the National Medal of Courage.  Robin was also decorated by the Governor General of Canada with the Sovereign’s Medal for Volunteers .  Her book The Cancer Olympics has won seven literary awards, and was listed among the best 55 self-published books of 2015.  Proceeds of sales go to cancer support programs. The Cancer Olympics is available from Amazon and Indigo.  She is currently in treatment for a recurrence of her cancer.

Hedy Wald

Hedy S. Wald, PhD is Clinical Professor of Family Medicine; Alpert Medical School of Brown University and Director of Resident Resilience and Wellbeing, Residency Programs in Child Neurology and Neurodevelopmental Disabilities; Boston Children’s Hospital-Harvard Medical School. Dr. Wald has been recognized with Dean’s Excellence in Teaching Awards, served as a Fulbright Scholar (medical education) for Ben Gurion University of Health Sciences, Israel, and is a Gold Humanism Foundation Harvard-Macy Scholar. Dr. Wald is passionate about medical education and enhancing the healthcare professional-patient-family caregiver relationship and has been a Visiting Professor at over 50 health professions schools world-wide, presenting on reflective writing-enhanced reflection supporting healthy professional identity formation as well as promoting resilience and wellbeing in health professions education and practice. Her work has been cited in the Wall Street Journal, LA Times, Chicago Tribune, Medical Independent (Ireland), and Jerusalem Post. Dr. Wald speaks internationally about her cancer caregiver experience to bring family caregiver voice, including for the National Cancer Policy Forum of the National Academies of Medicine, Gold Humanism Foundation, and Nanogagliato-nanotechnology conference and as invited expert host for the #btsm (Brain Tumor Social Media) Tweetchat on “Caring for the Family Caregiver: A Call to Action.” She has published about her cancer caregiver experience in Current Oncology, Academic Medicine,Pulse online, and reflectivemeded.org. Her essay “Poised at the abyss: A wife faces her neurologist husband’s brain cancer” took first place for Inspirational Non-Fiction at the Ocean Park, Maine Writers’ Conference and was published on kevinmd.com(https://www.kevinmd.com/blog/2016/07/poised-abyss-wife-faces-neurologist-husbands-brain-cancer.html ) A mother of 4 and grandmother of 4, she enjoys cycling and creative writing which she publishes in literary and medical journals. Follow her on Twitter: @hedy_wald “Mind/Body/Spirit of MedEd”

I would like to congratulate the #KidsCancerPain team on their fantastic use of social media. Project was a big inspiration for my TEDTalks!!

Dr. Vicky Forster,
SickKids Hospital, Toronto

Your Research Matters. We Help You Tell The World.