April 26, 2018 – Vatican City – Victoria Jackson, Founder of The Guthy-Jackson Charitable Foundation (GJCF), was honored with the 2018 Pontifical Key Advocacy Award at Unite To Cure: Fourth International Vatican Conference.
The award recognizes her visionary approach and transformative impact in advancing human understanding and funding for neuromyelitis optica (NMO) and related diseases.
The invitation-only conference was held at The Vatican, co-hosted by The Cura Foundation and welcomed approximately 500 attendees from around the world. Never before has NMO received this level of international attention, as Ms. Jackson informed the world’s best scientists, doctors, ethicists and leaders of faith, business, government and philanthropy about NMO.
“Living With Autoimmunity”
A conversation between Meredith Vieira and Victoria Jackson, Founder, The Guthy-Jackson Charitable Foundation.
“I’m honored and humbled to give voice to rare disease,” said Ms. Jackson, speaking to moderator Meredith Vieira, during the panel session, Living with Autoimmunity.
Most doctors have never heard of NMO, an autoimmune disease most commonly misdiagnosed as multiple sclerosis (MS). Misdiagnosis delays therapy and some MS treatments actually worsen NMO symptoms. However, there are two tests to help diagnose NMO:
- NMO-IgG antibody test
- NMO-MOG antibody test
“No one was going to die on my watch.”
Ten years ago, Ms. Jackson’s daughter Ali was diagnosed with NMO and was given four years to live. Now age 24, Ali’s beaten the odds and lives a full life. Ali was unable to attend the conference due to a scheduling conflict, as she was completing her first year in law school.
“No one was going to die on my watch,” said Ms. Jackson, who then, with her husband Bill Guthy, built The Guthy-Jackson Charitable Foundation (GJCF), a nonprofit effort with a mission to cure NMO.
Victoria Jackson, Founder of The Guthy-Jackson Charitable Foundation, meets Holy Father, Pope Francis at Unite To Cure: Fourth International Vatican Conference.
What Ms. Jackson did not know was that her quest to cure her daughter would turn into a revolution to save not only NMO patients, but a new model for how other diseases can be solved.
“Solving the rare disease NMO can lead to solving much more common diseases.”
A self-proclaimed “fearful warrior,” Ms. Jackson dove headfirst into the world of science and medicine, determined to bring everyone together to collaborate in ways they never have. She believes in the power of community, that no one should walk the rare disease journey alone.
Telling their story of the journey to find a cure, Ms. Jackson pointed out a defining moment when, “Ali turned to me and said, ‘Mom, this isn’t about you and me anymore,'” said Ms. Jackson.
“How perfect that we’re all gathered in this room [at the Vatican] for Unite To Cure,” said Ms. Jackson. “To me… from the beginning, we were going to collaborate and unite to cure. If somebody told me that 10 years later… I would be sitting here honored to be in front of all of you to share this story, I would have never believed it.”
The Guthy-Jackson Charitable Foundation vision aligns with Unite To Cure, to connect people in an open dialogue and catalyze teamwork to tackle major healthcare challenges around the globe.
“Advancements in Treating Rare Diseases”
GJCF Advisor, Michael R. Yeaman, Ph.D., presents NMO as a model for cures in a panel discussion moderated by Gbola Amusa, MD, Partner, Director of Research and Head of Healthcare Research, Chardan.
Also presenting at the conference, GJCF Advisor Dr. Michael Yeaman spoke of how NMO, and the GJCF process to solve it, illustrate a model of a “Rare Disease to the Rescue.” This concept is based on the fact that rare diseases offer a window into diseases that are not so rare.
“What I do hope to leave you with is that anything is possible.”
Solving the rare disease NMO can open doors to solving much more common diseases. For example, cancer and autoimmunity both reflect disorders in immune health. On one hand, cancer occurs when the immune system is too passive. On the other hand, autoimmune diseases occur when the immune system is too aggressive. By understanding this difference, curing NMO has the potential to reveal new solutions to prevent and cure other autoimmune diseases, and even cancer. One exciting method to cure autoimmune diseases is a process called tolerization, in which the immune system is re-trained to stop attacking the normal tissues of the body. The GJCF has launched its “Tolerization for Cures” campaign, focusing on NMO as a model.
“It was once said the NMO is ‘The Little Disease That Could,'” said Dr. Yeaman. “I would submit to you that NMO is ‘The Little Disease That Is,” he concluded.
“What I do hope to leave you with is that anything is possible,” said Ms. Jackson.
Ms. Jackson offered a snapshot of the GJCF blueprint to cure disease:
- Use your voice to be your own advocate.
- Reach out to others and create your own community.
- Get key stakeholders to collaborate.
- Only fund research that will directly translate to a cure.
Read more about the GJCF blueprint to cure NMO and other diseases in The Power of Rare: A Blueprint for a Medical Revolution by Victoria Jackson & Dr. Michael Yeaman.
There is no cure or regulatory-approved treatment for NMO. Through the work of GJCF, there are currently three Phase 3 clinical trials in progress to obtain the first-ever NMO treatment.
Click here for a list of Unite To Cure speakers, special guests, and moderators including:
- Holy Father, Pope Francis – The Vatican
- His Excellency Archbishop Vincenzo Paglia – Pontifical Academy for Life
- Francis Collins, M.D., Ph.D. – Director, National Institutes of Health
- Peter Gabriel – Singer / Songwriter
- Sanjay Gupta, M.D. – Chief Medical Correspondent, CNN
- Memet Oz, M.D., MBA – Host, The Doctor Oz Show
- Katy Perry – Singer / Songwriter
- Tony Robbins – Author / Motivational Speaker
- Meredith Vieira – TV Host / Producer / Anchor
Victoria Jackson Inducted into the National Women’s Hall of Fame