Motherhood Unstressed How to Transform Crisis into Spiritual Growth with Author of "More Than You Can Handle: A Rare Disease, A Family in Crisis, and the Cutting Edge Medicine that Cured the Incurable" Miguel Sancho and CGD Association of America Founder Felicia Morton
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Life irrevocably changed when Miguel Sancho and Felicia Morton discovered that their son, Sebastian, had chronic granulomatous disease (CGD), a disease which increases the body’s susceptibility to infections caused by certain bacteria and fungi. In this episode learn how their personal crises taught them how to manage chaos through various modalities of self-help, including faith, therapy, and meditation, and how you can incorporate those hard-earned lessons of survival into your life. Their story reminds us that although life can be chaotic, with the right mindset and the right tools, we have the ability to persevere.
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Resources:
Felicia Morton is the president and CEO of Morton PR, a full-service communications firm. Felicia has an extensive background in public relations, managing clients for Manning, Selvage & Lee and GolinHarris in Manhattan. Felicia has also worked as a journalist in the United States and Europe. Her articles have appeared in The Washington Post, The Wall Street Journal,The Providence Journal, Variety, The Hollywood Reporter, The Boston Globe, The Toronto Star, and The Prague Post. Felicia has a Bachelor of Arts degree from Columbia College and a combined Master’s degree (Communications & MBA) from Boston University.
Why advocacy?
Felicia Morton has dedicated her career to bringing people and ideas together to raise awareness for primary immune deficiencies. When her son, Sebastian, was diagnosed with Chronic Granulomatous Disease (CGD) in 2012, she found it difficult to find reliable information, medical professionals, opportunities for patients to connect, especially while her son was in and out of the hospital with infections. She was determined to use her skills to bring resources together and make it available to others in similar crisis.
To that end, Felicia became:
- Founder and Executive Director of the CGD Association of America (CGDAA), a Sec.501c3 organization, whose mission is to advocate on behalf of patients, carriers, and families in the CGD community by providing clear, accurate, and independent news and information about CGD and advancing CGD research.
- Was named as Patient Advocate Liaison for CGD for the Primary Immune Deficiency Treatment Consortium (PIDTC), funded by the National Institutes of Health, which consists of 43 centers in North America whose shared goal is to improve the outcome of patients with rare, life threatening, inherited disorders of the immune system
- CGDAA listed below as a resource:
- https://www.rarediseasesnetwork.org/cms/pidtc/Get-Involved/Patient-Advocacy
- https://rarediseases.info.nih.gov/diseases/6100/chronic-granulomatous-disease
- Was named as CGD Patient Organization for the National Institutes of Health National Center for Advancing Translational Sciences - GARD Genetic and Rare Diseases Information Center
- CGDAA listed below as a resource
- Listed with NORD, National Organization of Rare Disorders
CGDAA affiliated organizations:
Primary Immune Deficiency Consortium
https://www.rarediseasesnetwork.org/cms/pidtc/
Contact: Dr. Jennifer Puck
UCSF Dept of Pediatrics
Allergy Immunology and, and Blood and Marrow Transplant
NORD (National Organization for Rare Disorders)
Contact: Debbie Drell, Allie Crafton, Ashanthi DeSilva
Remember the Girls
Contact: Taylor Kane, Executive Director
https://www.rememberthegirls.org/
Jeffrey Modell Foundation
Contact: Fred & Vicki Modell
http://www.info4pi.org/wjmf/breaking-news
CGD Society, United Kingdom
Contact: Claire Jeffries, Operations Manager
Global Genes
Felicia Morton Nominated as Global Genes Rare Champion of Hope in 2020:
https://globalgenes.org/rare-champion-of-hope-award-nominees/
Immune Deficiency Foundation
Contact: John Boyle, President & CEO
- Affiliated via PIDTC and RDCRN
- https://www.rarediseasesnetwork.org/cms/pidtc/Get-Involved/Patient-Advocacy
- https://www.rarediseasesnetwork.org/pags
- Named to IDF’s PI Connect Governance Committee
Why innovation for the patient population?
In addition to providing a central clearinghouse of information for CGD patients, families and physicians, this work is innovative because the CGDAA will soon start an IRB approved Principal Investigator driven study using the database of carriers that Felicia created to study the symptoms and diseases experienced by X linked female CGD carriers. It has only recently been discovered that X linked carriers, long thought to be asymptomatic, actually experience medical problems linked to their genetic status. This research may lead to earlier diagnosis of treatable illness.
How does candidate inspire others?
Felicia inspires, educates and supports in diverse ways including:
1. Be The Match stem cell donor drives.
Stem cell transplant is a curative option for patients with CGD, however, many patients lack a suitable donor because of ethnic diversity. Felicia's Finnish background mixed with her husband's Costa Rican background made finding a donor for her son difficult. She organized others to run stem cell donor drives to sign people to the Be the Match Registry to increase the available pool of donors, including drives at the NIH and Georgetown University.
2. Presenter at Conferences
Felicia has represented the CGD community by speaking at the Rare Diseases Clinical Research Network (RDCRN) conference. She also spoke at the Rare Disease Awareness Day sponsored by Orchard Therapeutics.
3. E-newsletter and blog
Felicia writes the CGDAA e-blog and newsletter that is sent electronically to the community.
4. CDGAA Mentoring Network of Volunteers
Felicia recruits, trains and mentors the volunteers who in turn mentor families.
5. Family support
Perhaps, most importantly, Felicia is always directly available to speak with, and reassure, patients, parents, caregivers and carriers affected by the CGD mutation. She inspires and empowers families to take an active role in getting quality care for their family members.
What challenges have they overcome?
Starting a not-for-profit from scratch with no funding is a daunting challenge. Felicia completed an arduous and extensive application to the Pro Bono Clearing House Organization in the hope of being chosen and matched with a law firm to help her set up a 501c3 organization. Her application was deemed 'compelling' and in 2019 she successfully matched, and after many months, succeeded in achieving 501c3 status.
The next challenge was to bring together medical experts to join the team as advisors. Harry Malech, MD, Chief, Genetic Immunotherapy Section, Deputy Chief, Laboratory of Clinical Immunology and Microbiology, National Institute of Allergy and Infectious Disease, National Institute of Health volunteered to lead the CGDAA Advisory Board and recruit other top CGD physician specialists in the US.
Other member of her board include:
- Kathleen Sullivan, MD, PhD, Chief of the Division of Allergy and Immunology, Children’s Hospital of Philadelphia
- Jennifer Leiding, MD, Immunologist and Allergy Specialist, Johns Hopkins All Children’s Hospital
- Rebecca Marsh, MD, Clinical Director, Primary Immune Deficiency Program and Co-Director, Diagnostic Immunology Laboratories, Cincinnati Children’s Hospital
- Mary Dinauer, MD, PhD, Fred M. Saigh Distinguished Chair of Pediatric Research, Professor of Pediatrics, Washington University School of Medicine - St. Louis Children’s Hospital
Fundraising is another challenge that is ongoing, however, two large pharmaceutical companies have already supported the new organization.
Finally, and most personally, Felicia worked as a CGD advocate, which formed the building blocks of the CGDAA, while seeing her son through multiple hospitalizations for infections until he received a successful stem cell transplant done at a large institution in NC. She is an X-linked carrier of CGD, the daughter herself of an X-linked mother, a wife and owner of her own PR firm.
Miguel Sancho is an Executive Producer currently showrunning and developing projects with Six West Productions. His upcoming project, The Proof Is Out There, premiered on the History Channel in January 2021. His other recent projects include the A&E unscripted series Jail Cam; the History Channel special Black Patriots: Heroes of the Revolution; and Lifetime’s Beyond the Headlines: The Watts Family Tragedy. Prior to that he was executive producer on the documentary series The Untold Story hosted by Elizabeth Vargas, a strand of 2-hour specials airing in spring 2019. He worked as showrunner on some of these specials himself, overseeing staffing, budgets, shoots, scripts, and edits; on others he served as a senior supervising consultant. He performed a similar role on the A&E series Cults and Extreme Belief which aired in the summer of 2018. He also works as a consultant for development and scripting for Efran Films on various true crime series.
Prior to his work at A+E Networks, Miguel accumulated more than two decades of experience producing national television news broadcasts, most recently as senior producer for the ABC News program 20/20. He has conceived and managed the production of hundreds of primetime broadcasts, ranging from long-term documentary projects to live breaking news specials. Known as a prolific originator of ideas, a masterful script editor and a dexterous problem-solver, Miguel was responsible for many of the most high-profile projects in the program’s recent history, working extensively with top talent such as Diane Sawyer, Barbara Walters, Elizabeth Vargas, David Muir, Dan Harris, Chris Cuomo, and John Stossel. With a background in investigative reporting, he oversaw many of the most legally sensitive projects the network aired during his tenure there. He and his teams have won many of the industry’s top journalism awards, including the Edward R. Murrow, the George Polk, the Sigma Delta Chi, the IRE Award. Most recently, he won a 2017 Emmy for an hour-long documentary special on the Las Vegas massacre, and the Black Patriots project is currently nominated for a 2020 Emmy. He enjoys the teaching of television journalism as much as the practice of it, and has conducted numerous staff seminars on writing and shooting. He also served on the ABC News committee on Diversity, Growth, and Development.
Prior to his time at ABC, Miguel spent eight years as producer at the CBS News magazine 48 Hours, where he developed his skills as cinematic storyteller in the long-form format. During his years in the field he’s covered stories all across the US and abroad, including Latin America, Europe, Africa, and the Middle-East. He speaks Spanish and has basic knowledge of French, German, Russian, and Arabic.