Next on CCTV: What is NMO?

Posted by & filed under CCTV's THE VIBRANT GENE talk show, Rare Disease.

Imagine being 12 years old.  You are perfectly healthy, leading a normal life.  One morning you wake up temporarily blind.  Today we will hear personal accounts what it is like to have Neuromyelitis Optica (NMO) and what is being done to combat the rare disease.  What is the best treatment?  Is genetic testing available?  What is being done to combat this devastating autoimmune disease?  Find out from our expert guests.

 

 

About Our Guests:

 

Sumaitra
Sumaira Ahmed is the founder of The Sumaira Foundation for NMO, a nonprofit geared towards raising awareness of Neuromyelitis Optica while fundraising for research to find a cure.  Sumaira was diagnosed with sero-negative Neuromyelitis Optica Spectrum Disorder (NMOSD) in the summer of 2014. While undergoing aggressive chemotherapy the next year, she became the 1st-ever Miss Bangladesh-USA. Her social platform was the importance of education and its correlation to tolerance and a prosperous future for Bangladesh. Sumaira graduated from Boston University College of Communication with a bachelors degree in public relations. She also studied film acting at the acclaimed KNK Acting Institute in Mumbai, India. Sumaira has acted in numerous projects including Hindi and Bengali music videos, a documentary, and voice over projects. In 2012, she starred as the female lead in an English-language independent film titled, “Humble River.”  She is the former Director of Network Development at Boston Laser / Boston Eye Group and is now the Marketing & Business Development Manager at STRATUS Center for Medical Simulation at the Brigham & Women’s Hospital. Sumaira created a personal blog, “Flower: The Converted Bostonian,” a lifestyle blog about fine wining and dining, travel, dating & romance, and eventually chronicled her health journey.
Gabriela pic

In 2014, Gabriela Romanow’s then 20-year-old son was diagnosed with NMO.  She refocused her professional endeavors to helping raise money to find a cure for this potentially crippling disease.  Throughout her career, Gabriela has focused on raising awareness of, and money for issues which are important to her.  She spent a dozen years at ACCION International, a non-profit organization providing small loans to the self-employed poor throughout the Americas, where Gabriela worked in Communications and Development.  Gabriela was the president of the Brookline Library Foundation which raised over $4 million to restore and renovate Brookline’s Public Librar and served for a decade as trustee of Brookline’s library system.  After her time with the library, Gabriela worked on environmental issues:  as fundraiser for the public radio program ‘Living on Earth’, and as a partner of Double Exposure, Photographing Climate Change, which produced a museum exhibit that traveled the country for four years.  In addition to her professional endeavors, Gabriela serves on the boards of the Lenny Zakim Fund, the Cambridge Homes and 1010 Memorial Drive.  She currently lives in Cambridge with her husband Bob, and is the proud mother of Jake and Max Romanow.

 

 

About Our Producer/Host:

 

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Kayla M. Sheets is a board-certified, licensed genetic counselor and founder of Vibrant Gene Consulting, a concierge practice located in Cambridge Massachusetts.  Kayla is specialized in taking genetic insights and translating them into greater health and wellbeing for her clients. She also provides expert advice about parental DNA testing to confirm relationships.

Our Show was Made Possible by:

Hayley Green (assistant producer), Ya Gao (editor) and Sherry Wang (CCTV technical production).

For Private Genetic Counseling, visit our website at www.vibrantgene.com.  We are also reachable via email (contact@vibrantgene.com) or phone at (617) 433-7874.