MEET THE FOUNDING TEAM
We are overjoyed to introduce World Moyamoya Alliance's Founding Team. Similar to our Board of Directors, our Founding Team consists of moyamoya patients, family members, and friends of patients. Regardless of the connection, everyone has one thing in common: passion and dedication to increasing awareness and education of moyamoya, and supporting those already living with it.
Founding Team advocate
In the spring of 2013, Matt was living life at a hundred miles an hour, balancing work, school, family, and a new dog. It was finals week on top of work deadlines, and energy drinks were the unhealthy solution, until he woke up with a throbbing headache and spiking blood pressure. Sensing something was wrong, Matt immediately drove to the hospital where he advocated for an MRI instead of a CT scan, which ended up being a lifesaver. While initially being discharged with “hypertension,” the MR imaging continued its normal routing through multiple physicians until one saw “the puff of smoke” that would change his life forever.
With a diagnosis in hand, Matt spent the next week reading and learning everything he could about moyamoya, its treatment options, and expert providers. Nearly a day before their annual picnic, he learned about Stanford’s moyamoya team, so packed his car and drove up to Palo Alto to meet the care team, patients, and their families. Immediately upon arrival, he knew Stanford would be his place of care and recovery. Shortly thereafter, Matt had a successful left-side STA-MCA bypass, and continues to visit annually for both his annual checkups and, of course, the picnic to see his favorite physician, nurse practitioner, and care team.
Following surgery, Matt continues serving as a federal civil servant in the military and defense communities, as a research engineer. He’s married with three young children, where they enjoy spending time on their ten-acre farm in the hills outside of San Diego, CA. When not working, Matt enjoys travel, having visited all fifty states and nearly as many countries, spending time with his family, seeking adventures, finding the unbeaten paths in nature, and sharing his moyamoya story as testimony to his faith. By joining the World Momoyama Alliance team, Matt looks forward to spreading his story to others, the role of self-advocacy in healthcare, and the importance of trusting your inner instinct.
My name is Mariah Bingham, and I live in Dayton, Ohio.
My aunt was diagnosed with moyamoya disease in 2016. During her first year of being diagnosed, I spent a lot of time with her to take her to appointments & making sure she wasn’t by herself. I have a master's degree in social work, have my LISW-S, & specialize in EMDR therapy (trauma). I am a clinical director for mental health and addiction supervision, as well as providing individual counseling.
I’m passionate about raising awareness for moyamoya, educating anyone & everyone, & supporting loved ones through the process. My goal is to help others understand the connection between physical health & mental health. I look forward to being part of a community that is supportive of each other & creates awareness about this disease throughout the world.
Twyla Bozeman-Dean is an educator that currently lives in The Woodlands, Texas, a small community near Houston.
After having a stroke, she was notified that the stroke was caused by a rare disease called moyamoya in 2008. Soon after a great deal of family support and research from the Stanford Moyamoya Center, she had her first brain surgery and six weeks later her second brain surgery at The Methodist Hospital Medical Center in Houston, Texas.
After learning how to read and speak again, she became active with The Methodist Hospital Stride for Stroke Walk, started her own blog about being a moyamoya Warrior, and joined various support groups focused on stroke, epilepsy, and aphasia.
As an educator, she is passionate about not only spreading awareness of Moyamoya to medical and public communities with a special focus on minority communities, but also providing support and strategies to combat challenges that may lay ahead on the Moyamoya journey.
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Alice is a junior at Duke University from Orange County, California.
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After being diagnosed at 6 years old, she had her first surgery in South Korea and second on her 7th birthday (September 11) at Stanford’s Lucile Packard Children’s Hospital. Though experiencing multiple TIA episodes throughout elementary, middle, and high school, she is grateful to have never had a major, debilitating stroke.
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Throughout high school, she took up a variety of opportunities to advocate for moyamoya and invisible illnesses. In addition to blogging her journey (posts reaching over 20 countries), she choreographed and performed to moyamoya fighter Keala Settle’s “This is Me” as a dedication to all moyamoya fighters. The performance video, now with over 1.5K views, has been seen and shared by Keala on her Twitter page.
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As a Global Health and Public Policy double major at Duke, Alice has developed a range of academic research and policy work experience. She hopes to contribute her passion for and skills in the health policy field to advocate for children with rare or complex medical needs.
In joining the World Moyamoya Alliance, Alice is grateful for the opportunity to learn from and continue to be inspired by fellow moyamoya fighters. She looks forward to the nonprofit’s role in advocating for moyamoya/rare diseases on the policy front and helping to further connect the moyamoya community.
Mary is a native Michigander, who currently lives in Fort Myers, FL.
On July 15, 2021 she was admitted to the hospital with neurological symptoms. With a clean CT, Mary was sent home with a diagnosis of "stress". She followed up with a neurologist the next week & he ordered the MRI that led to the August 2021 moyamoya diagnosis. Armed with the diagnosis, Mary feels lucky to have found Dr. Steinberg & after a self referral, she was accepted as a patient, traveling cross-country for her surgeries at Stanford in October 2021.
Since the diagnosis & treatment, she has been active on LinkedIn sharing her moyamoya story in a post that has garnered over 9,000 views. She looks forward to continuing to sharing her story & drive awareness of moyamoya.
Mary received a Bachelor of Science in French from the University of Michigan, where she worked alongside distinguished scientists to research the genetics of C. elegans & hopes to continue another degree studying the genetics of moyamoya. She is currently working on a second bachelors in computer science.
She is passionate about advocating for rare diseases & ways to improve care, & a referral system to expert doctors. She is currently running for the board of her local health system in order to make changes that would help others. Mary most looks forward to widening the network & awareness with the World Moyamoya Alliance, & ensuring every moyamoya patient is correctly diagnosed & properly treated the first time.
Miranda Cook of East Lansing, Michigan is a Moyamoya patient attending Central Michigan University, pursuing a Bachelors in entrepreneurship, with a focus in marketing.
After being misdiagnosed at 14 years old, Miranda had her first ischemic stroke a month before her 18th birthday. She then had bilateral bypass surgeries at Cleavland Clinic under Dr. Peter Rasmussen. Miranda’s "new normal" consists of an irregular EEG, random loss of feeling in her limbs, and brain fog.
Miranda now writes apbout her experiences on her blog, "Suma's Power", in an effort to spread awareness, normalize the reality of hardships in life, build camaraderie, and empower others. She hopes to model that it's okay, even encouraged, to be open about physical and mental health challenges, recognizing that, as humans and patients, we are not immune to hardships. So, why not talk openly about that reality -- to help, support, and uplift others in their own hardships and time of need?
Miranda's firsthand experience as a patient -- being doubted by ER doctors and having her neurological symptoms brushed off solely as "classic panic attack" symptoms, empowers her to continue her advocacy efforts amongst medical professionals, mental health professionals, and the general population.
Miranda is honored and excited to serve and support the moyamoya community as part of the World Moyamoya Alliance team.
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Maria is from Burton, Ohio and is the mother of four children.
Her youngest, Erin, had Down syndrome and was diagnosed with moyamoya in 2016. In hindsight, Maria now sees where there were signs and symptoms that were overlooked, feeling strongly that her daughter could have been diagnosed much earlier, had more been known about moyamoya sooner. Maria has been advocating for early diagnoses of moyamoya ever since .
Maria is a “2010 Winner of the President Award” and “2013 Exceptional Meritorious Service Award” presented by the NDSC (National Down Syndrome Congress) “for improving lives through the development of specialized eyeglasses for individuals with Down syndrome.”
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"Vision Monday" magazine awarded her one of their "Most Influential Women of 2013."
Maria was named Toyota’s "Mother of Invention" for 2016 by Tina Brown’s Women in the World. Maria is an Ambassador for Buddy Cruise, is on the LuMind IDSC (International Down Syndrome Community) board, and is a member of World Moyamoya Alliance's founding team.
She presented at the World Down Syndrome conference in Scotland on her daughter Erin’s journey with moyamoya, a disease/syndrome not on the Down syndrome community radar, yet 24% of all moyamoya patients have Down syndrome.
In early 2019, Erin's story and Maria's moyamoya and Down syndrome advocacy efforts were featured in Global Down Syndrome Foundation's magazine Down Syndrome World, in an article titled "What Families Should Know About Moyamoya Disease."
Her daughter, Erin, passed away from complications with moyamoya in June of 2019 after a long battle. Maria is a well-known advocate in the Down syndrome community and continues to present at Down syndrome conferences to help with early detection of moyamoya disease.
Maria is honored to be part of the World Moyamoya Alliance founding team and looks forward to utilizing this platform to continue emphasizing the importance of moyamoya awareness, particularly in the Down syndrome community.
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Claris is a moyamoya patient from Livermore, CA.
She presented with migraines and TIAs from ten years old, with her neurologist initially diagnosing her with complex migraines. Test results remained inconclusive until adulthood when an MRA was ordered, while living abroad, as a last minute addition. Claris was immediately referred to a specialist in Germany for her double STA-MCA bypasses.
She has been a member of the World Moyamoya Day - May 6th Facebook group since 2008.
Claris has her BS in Biological Sciences (with an emphasis in neurobiology, physiology, and behavior) from UC Davis, and her Master of Research, Evolutionary Biology, and Systematics from the University of Glasgow.
As a result of her diagnostic journey and surgical experience with moyamoya, Claris went on to be a doctoral researcher -- pursuing stroke research at Cardiff University through an integrative neuroscience program. While living in the UK, she was an active member and ambassador for the UK Stroke Association.
She is currently studying for a degree in Spanish Language and Culture, Global Studies and International Politics, with plans of applying to the U.S. Foreign Service. Her goal is to represent the U.S. in Latin American countries, and is passionate about providing patients from low-income communities with access to top-notch Moyamoya treatment.
Claris is honored to be part of the World Moyamoya Alliance founding team and looks forward to continuing to serve the moyamoya community globally.
Kristen is a Licensed Professional Counselor and Registered Play Therapist located in Grapevine, TX. Kristen's passion is working with children and teens who have experienced trauma, including medical trauma.
Kristen was diagnosed with moyamoya at the age of 3. Once in college, Kristen started experiencing neurological symptoms related to moyamoya and flew to Stanford for her brain surgery. After a successful surgery, Kristen began the long process of healing physically and emotionally.
In her job, Kristen works with families to help feel validated and supported during times of extreme stress. It can be lonely and overwhelming to go through life with a rare brain disease. Kristen hopes to help those who feel lost during the process of navigating life with moyamoya.
Kristen is excited to be part of the moyamoya community and help bring education and awareness to the disease. She wants to be a resource to families who need support.
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Megan is a native Michigander currently living in Virginia.
She was diagnosed with moyamoya in March of 2007 at the age of 15. She spent a week at the Detroit Medical Center’s Children’s Hospital after having a seizure while on a weekend trip to New York City. She was finally diagnosed and had EDAS the following May and June. Throughout her journey at the DMC everyone knew her or had heard of her case, and as a 15-year-old she felt famous going to her appointments and that made getting poked and prodded a little easier to bear.
She continued on to graduate high school and then went to Central Michigan University where she graduated with a Bachelors of Applied Arts in Recreation, Parks & Leisure Services Administration with a concentration in Recreation and Event Management. She was required to do a 30-week internship to complete her degree, she took this opportunity to get as far away from Michigan as she could. She accepted an internship on a United States Coast Guard Base in Aguadilla, Puerto Rico, where she resided for a total of 2.5 years before moving back to Michigan in December of 2017.
Megan is looking forward to planning events with a group of individuals who all have a tie to the moyamoya community and who have different experiences with this rare disease. She is looking forward to using her degree and personal knowledge to make sure that these events are accessible to all; which is something she is very passionate about.
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In 1993, Greg's 5 year old son, Matthew, was experiencing intermittent transient ischemic attacks and was eventually diagnosed with moyamoya. Greg was told by the neurologist that it was not treatable and that Matthew was susceptible to having strokes.
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Feeling helpless, Greg sought a second opinion from Dr. Gary Steinberg at Stanford Hospital in Palo Alto, CA and Matthew had 2 successful bypass surgeries by Dr. Steinberg in September 1993. Matthew's recovery was remarkable and his story was included in a 1995 educational video produced by the Stanford Stroke Center.
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As early advocates for the support of moyamoya patients and parents, Greg and his wife were often contacted by Stanford to interface with apprehensive parents of children facing surgery for moyamoya.
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Greg and Matthew have made it a priority to attend the annual summer Stanford Moyamoya Picnics since they began in 2005 and find it reqarding to list to the many stories from parents and patients from across the nation.
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One familiar theme of those stories is that moyamoya is still being misdiagnosed or being untreated. This was Greg's personal experience from the start and is the reason for his interest in being a team member of the World Moyamoya Alliance. It is what motivates him to promote the education and dissemination of information for the diagnosis and treatment options for moyamoya.
Wendy was diagnosed with unilateral moyamoya after a CT scan with contrast in 2018. Leading up to her diagnosis, she experienced a period of increasingly chronic migraines with visual & sensory aura. She underwent an STA-MCA bypass under the supervision of Dr. Gary Steinberg at Stanford in 2018.
Wendy has a Master of Science in Information Studies & works as a digital archivist, collaborating with archivists & librarians across the country to preserve digital knowledge for long-term access.
She looks forward to applying her experience in information science & data management to the World Moyamoya Alliance’s research mission & hopes to help identify ways the Alliance can support the research objectives of moyamoya specialists & community members.
She lives in Atlanta, Georgia.
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Jesenia is a special education teacher who lives in Lakeland, Fl with her husband and two young daughters.
She is a moyamoya survivor, first diagnosed in 2013. At the age of 16 and over the course of five years, she has had three life-saving brain surgeries. At the time of her diagnosis, her family had a difficult time finding answers and support for this progressive disease. Few doctors knew what it was and even fewer had experience with proper treatment.
Given her personal experience, her passion lies in raising awareness and serving as a resource to help patients and their families feel a sense of community and support while growing in self-advocacy.
In working with the World Moyamoya Alliance, she desires to see an increase in treatment knowledge in the medical community to prevent patients from being misdiagnosed and, ultimately, see a decrease in deaths.
The idea of providing scholarships for high school/college students with a moyamoya diagnosis excites her and she looks forward to serving the next generation in this capacity.
Meg currently resides in Fort Wayne, IN. She became connected to the moyamoya community in the summer of 2008 when she was unofficially diagnosed with moyamoya disease.
In the spring of 2008, Meg started to have severe migraines, which she attributed to stress from school and her mother's terminal illness, but once she was hospitalized due to a migraine, it became clear it was more than stress.
After almost six months of testing & being referred to specialists throughout Indiana & Illinois, Meg was able to have surgery in Jan 2009 and June 2009 - less than a week after she graduated from high school! Since having surgery, she has tried to remain active in online moyamoya support groups, paying special attention to mental health concerns & challenges children & adolescents face during testing & hospitalizations.
Meg currently works as a Certified Child Life Specialist, helping children & their families cope with life threatening illnesses, crises, & acute emergencies, so she is especially passionate about providing that support & resources to children & families dealing with moyamoya. Meg is also passionate about mental health & the toll a life threatening disease can have on an individual & their family & friends.
Meg is thrilled to be a part of the World Moyamoya Alliance and is looking forward to an increase in awareness about moyamoya and an increase in advocacy efforts. Meg hopes the World Moyamoya Alliance serves as a place individuals and families can turn to when they need a little bit of hope in their journey and need help navigating that journey.
Manan Kumar
Alexandra Headlands, Queensland, Australia
My History:
I am a healthy person with no prior medical conditions. Suddenly, on Halloween 2017, I suffered a Haemorrhage stroke. Initially we thought it was due to a lack of sleep and fatigue as I was working long hours and have a young family. But after an angiogram it was confirmed I had MoyaMoya disease. I was lucky that he stroke didn't affect any body function and I was able to recover quickly.
In 2018 I met Dr Steinberg during a business trip to SF and decided to undergo the bilateral surgery in Nov/Dec 2018. This is when I connected with the MoyaMoya community to help plan and better understand how to prepare for these surgeries. The right side surgery went well however I had severe aphasia after the left side. It took a while to discharge as I was non-verbal to start with and slowly started to recover. I continued my rehab in Australia and have now receoverd. It's hard to say if I am back to "normal"... one can't really assess what "normal" is after such events. I do admire the beauty of the brain and body with it's ability to heal and adapt. The MoyaMoya community helped a lot through my recovery and I am looking to add to it through my skills and shared experince.
My skills:
I am a qualified accountant but have worked in commercial and business settings in various decision support roles. I have been working in technology companies over the last 10 years (Linkedin and Atlassian) and now work in the Sustainability team for Atlassian.
My Qualifications:
- Bachelor of Accounting
- Chartered Accountant
- MBA
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Rachel Lewis is a 27 year old, self proclaimed “Southern Belle” from Greenville, South Carolina. She proudly rocks an extra chromosome and thrives as a moyamoya survivor. Her neurosurgeon has recommended she live a “normal” life, but Rachel has chosen an “extraordinary” life!
At the age of 18, Rachel suffered multiple strokes which earned her a thirteen day stay in Neuro ICU and 12 days in an inpatient rehab hospital. She was diagnosed with moyamoya in 2015. At that time, the local neuro team denied the option of surgery and recommended she go home and wait for the next stroke. The search began for second opinions and Rachel’s parents found a neurosurgeon at MUSC in Charleston who successfully performed indirect bypass in April of 2016.
Since then, Rachel’s family has relied on the World Moyamoya Day - May 6th Facebook group for resources and the ability to stay connected to the moyamoya community.
Non-profit organizations have given Rachel a voice and an opportunity to contribute. She serves as a Global Messenger and Health Messenger for Special Olympics. She travels to Washington DC annually to advocate for fellow SO athletes on Capitol Hill. Rachel was the first individual with Down syndrome to serve on the board of the Down Syndrome Association of the Upstate. She volunteers at her church, her YMCA and a local food pantry.
Rachel’s daily mission is to represent individuals with Down syndrome in a positive manner. Creating awareness, without panic, about the connection of Down syndrome and moyamoya is her passion. She may have both, but neither prevents her from fulfilling God’s purpose for her life!
Eric Liu resides in Walnut Creet, CA. Eric studied Economics at Stanford University, class on 2002.
In 2007, he experienced a terrible headache, right side parallysis, & loss of speech while exercising at a gym, resulting in somebody calling 9-1-1. After two doctors were unable to determine the cause of his stroke, a third doctor properly diagnosed him with moyamoya disease. As a result of his stroke, Eric lost the ability to talk, read, & write.
Over the course of two months, he was in three hospitals, including San Francisco General, California Pacific Medical Center (CPMC) Davies campus for rehabilitation, & UCSF hospital where Dr. Michael Lawton performed his surgery. Unable to connect the arteries for a direct bypass, immediate post-operative concerns were that results of the surgery weren't as optimal as initially hoped for.
With family residing in Taiwan, Eric sought continued post-operative care abroad from an eastern & western doctor, who massaged his brain for 2 months, & made dietary changes in an effort to decrease inflammation, & improve heart, brain, & microbiomme/gut health. A year post-op, Eric's follow-up MRA with Dr. Lawton determined the bypass was working & that he hadn't experienced any more strokes.
Eric is honored & excited to serve the moyamoya community as part of the World Moyamoya Alliance founding team, & looks forward to continuing to educate medical professionals & the general public, alike, about moyamoya.
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Kate Meeuwsen hails from the beautiful college town of Corvallis, Oregon.
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Diagnosed with unilateral moyamoya in early 2019, Kate quickly found solidarity and hope in connecting with moyamoya survivors sharing their experiences online. After a transient ischemic episode in late 2018, Kate underwent a lengthy and successful direct bypass surgery in spring 2019 at Oregon Health & Science University (OHSU) under the supervision of Dr. Aclan Dogan.
Highlights in Kate's experience with moyamoya include a trip to New York City in 2020 to meet a beloved moyamoya survivor after a friendship cultivated online. Since her surgery, Kate has gotten married, supported her partner's Ph.D. defense, and purchased her first home.
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In addition to cheering on those who are grappling moyamoya, Kate advocates and shares openly about the importance of aspirin, stroke awareness, and thriving survivorship with anyone who will listen.
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Kate works full time as a Creative Director at a boutique real estate firm, which provides her with organizational skills, project management experience, and a keen eye for detail--all of which she will lend to the World Moyamoya Alliance’s mission.
In her spare time, you can find Kate attending live music with her husband, getting tattooed, or earning a sunburn in her backyard even when it's cloudy. She is an avid podcast listener, voracious reader, and brewer of (low quality) beer.
Joanne C. Minori lives in Raleigh, NC. She is the spouse of a former moyamoya patient, Tony Minori.
Joanne became involved in the moyamoya community when Tony was diagnosed with moyamoya in 2013. Even after Tony passed in 2014, she and her daughters remained connected to the moyamoya community and its survivors, in an effort to pay it forward and to continue educating the population at large about moyamoya.
Her interest in paying it forward, educating and supporting patients and families impacted by moyamoya was renewed when her niece’s husband was diagnosed with moyamoya in 2016.
Joanne is honored to be part of the nonprofit team and is excited to see how the World Moyamoya Alliance community grows globally even more, as it educates others along the way.
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Tracie O’Neill is a moyamoya warrior residing in North Aurora, Illinois, a suburb of Chicago.
She experienced her first stroke at age 7, but was not properly diagnosed with moyamoya until she was 42 years-old. Between age 7 & 42, Tracie suffered from horrible migraines, TIAs/seizures, & at least 3 other strokes.
After being diagnosed with moyamoya at the University of Chicago Medical Center in 2009 by Dr Fady Charbel, Tracie contacted Stanford Hospital & spoke with Teresa Bell Stephens, BSN, RN, CNRN & Jill MacInnes who answered her questions & eased her stress. Tracie's records were reviewed by Dr. Steinberg & she was at the Stanford Moyamoya Center for surgery a month later.
Tracie has been involved with the moyamoya community over the past 13 years. As a registered nurse, she takes every opportunity she can to educate health care personnel on moyamoya. She has organized several gatherings with others in the Chicago area & throughout Illinois who have been affected by moyamoya. It has been my pleasure to get to know others affected by this disease, share my experience, clinical expertise & assist them with navigating our challenging health care system.
As previously mentioned I am a registered nurse with a Bachelors degree in nursing & a Masters degree in Public Health. As a Public health professional, I have the opportunity to work with many non profit organizations. I currently work at Rush University Medical Center in Chicago in the neurosciences department. I am currently working in the movement disorder clinic & assisting with research for treatment of Parkinson’s Disease.
I am very passionate about education, especially concerning children & strokes. As a pediatic stroke survivor, I can tell you the doctors never considered that I may have had a stroke when I was 7 years old. Stroke awareness is key as well as early diagnosis. Too many times, I hear stories of individuals being misdiagnosed for years, as I was. I look forward to working with the moyamoya community in assisting those needing resources, disease information & learning more about treatment on an international level.
Tracie is eager to continue serving & supporting the moyamoya community as part of the World Moyamoya Alliance any way she can.
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Sarah Oberndorfer lives just outside of Kansas City, KS with her husband and five children.
On a November day in 2011, they became a part of the moyamoya community when her son, Jackson, had a stroke at school in his 2nd grade classroom. This led to an ER visit, medical professionals saying "healthy kids don't have strokes", until an MRA revealed almost 100% occlusion of two corotid arteries and led to a diagnosis of moyamoya. Sarah and her husband brought Jackson to Boston Children's Hospital for bi-lateral pial synangiosis procedure performed by Dr. Smith and Dr. Scott in January, 2012. Jackson had two strokes and multiple TIA's both before and after surgery. For the last ten years, Sarah has walked this road of recovery alongside Jackson as he learned how to do everything again.
Sarah is passionate about helping other parents get to share their moyamoya experience so they have access to correct diagnosis and excellent medical care. In addition, through her 20 years of experience as an attorney, she has been dedicated to researching therapeutic treatment options for moyamoya survivors so they can continue to move from baseline stroke recovery to thriving.
Through participation in the non-profit, World Moyamoya Alliance, Sarah hopes to help give families a way to share their common experience of moyamoya; and find new research, treatment, and strategies for a whole-person recovery plan path post diagnosis.
Bisi is blessed with two children and alongside her husband, they live in St Helens, United Kingdom.
Approximately 2 years ago, Bisi’s daughter was diagnosed of Moyamoya but the diagnosis wasn’t picked up earlier enough until the condition was at its advanced stages. Bisi observed that her daughter started exhibiting weakness in the arms especially while eating. She would use another hand to lift her other hand up. There was also an occasion where her daughter blacked out during physiotherapy session in school. The assumption then was that her daughter getting lazier.
Bisi and her husband sensed that there was more to these behaviours bit doctors cited hypotonia due to the fact that their daughter already has Down’s syndrome from birth. After changing hospitals as a result of relocation, a neurologist finally listened to Bisi and her husband and an MRI was arranged to investigate what was going on. Bisi even thought their daughter had done sort of cerebral palsy in addition to her other medical needs. To their shock, the doctor diagnosed their daughter with Moyamoya and advised that a revascularisation surgery was advisable within the next of month, Bisi’s daughter has now had a 12 hour bilateral revascularisation surgery. With good hydration, aspirin they are managing their daughter’s diagnosis.
In addition to disability advocacy, Bisi is an astute entrepreneur, public speaker, philanthropist, life and business coach. She co-authored the best-selling book titled ‘I FLY: stories of overcoming adversity’ and independently published another book titled ‘Befriending Adversity: How I leveraged the power of adversity in my life and business’. A former science teacher, Bisi has volunteered for a number of charities including supporting rural women affected by HIV/AIDS in a UNICEF funded project as well as training refugee women for the acquisition of valuable entrepreneurial and leadership skills. Bisi is the founder of Britain’s multi-award winning eponymous babywearing brand; Joy and Joe baby wrap carriers. She is the admin of the Joy and Joe special needs parenting support online community. She is a mother to two gorgeous children who were both born with special needs.
A graduate of the University of Nottingham and scholar. Bisi is the recipient of the prestigious DFID/Commonwealth scholarship for postgraduate studies. An OFSTED registered early years expert and governor in three special needs schools. In 2012, Bisi was named as one of the top 100 business mums in the UK by the mumsclub award. Bisi's business won the first prize of the venture further award by the University of Manchester business school.
In 2017, she was voted as the best female entrepreneur by the talk of Manchester awards. Bisi is currently the BAME officer for the St Helens south and Whiston CLP. Bisi is the Ex-CLP secretary for her CLP and she is currently the local labour councillor for Parr ward within St Helens MBC Bisi was elected on to Labour women’s Committee in 2020
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My name is Tara Pollock and I am from Ontario, Canada.
I am a Mom to 5 beautiful children. My children are adopted and all have very different special needs.
My youngest child, Drew, has moyamoya syndrome. Drew had his first stroke at age 3.5 years old followed by 2 watershed strokes from chronic cerebral ischemia followed by an occipital lobe stroke. Drew has had two burr-hole, revascularization surgeries. The first one was successful and the second one was not, therefor he carries a heavy symptom burden at times. Drew’s moyamoya is aggressive and rapid progressing in nature. We are currently awaiting results from scans that will tell us if they can do another brain surgery safely.
When I’m not attending medical appointments, I work full time in developing programs and teaching children in a special education classroom. My husband and I play an active roll in our Down Syndrome Community. In 2020 we were nominated by our son’s medical team for Caregiver of the Year and received Honourable Mention.
I look forward to serving as a board member and am honoured to be a part of the World Moyamoya Alliance.
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Miya Sakai-Cheng is a senior at Harvard University studying Economics with a minor in Energy and the Environment. She is originally from Stockton, CA.
When Miya was only five years old, her mom experienced multiple transient ischemic attacks (TIAs) and was misdiagnosed with Multiple Sclerosis. After months of acting as her own medical advocate, she was correctly diagnosed with moyamoya. She then underwent direct revascularization that saved her life.
Around this time, it became apparent that Miya’s aunt, who had suffered debilitating strokes and comas decades earlier at an extremely young age, also had moyamoya. Due to a lack of awareness surrounding the disease, she had been labeled a medical anomaly for most of her life.
Miya is passionate about spreading awareness about moyamoya, and excited to do so through her involvement in the World Moyamoya Alliance.
Megan V. Sennett currently lives in Annapolis, MD with her husband Ivan, and two dachshunds Benny and GG.
Her daughter Gwendolyn Zeckowski had a stroke on February 11, 2020, and was diagnosed with moyamoya disease on February 14, 2020. It was shocking as Gwendolyn is an elite track and field athlete and student at The University of Maryland.
Navigating a rare, and incurable disease diagnosis and treatment has its challenges, especially during a global pandemic. While having access to the very best healthcare in the DMV area (Johns Hopkins, Georgetown University, etc) it was still difficult to find experts in the moyamoya field. Megan and her family sought online support groups. She conducted hours of online research and found the Stanford Moyamoya Center Facebook page. It was life-changing. They discovered a viable and successful solution: neurovascular bypass surgery at the Stanford Moyamoya Center with Dr. Gary Steinberg.
Transcontinental travel for life-saving brain surgery during a global health crisis seemed impossible. Were it not for the amazing outreach and support of fellow Moyamoya families they would never have mustered the courage to make the journey: physically and medically and mentally and spiritually. They traveled from Maryland to California in June of 2020 for surgery at Stanford.
Since her daughter's initial diagnosis Megan has been in contact with the moyamoya community sharing her family's experiences, in hopes of helping others with their healing journey.
Megan has many years of marketing experience as a content creator, copywriter, and blogger. One of her specialties is translating complicated medical journals into common language so that all readers can properly understand diagnoses and treatment options. Her passion is to inform patients and families so they can ask educated questions and self-advocate for the very best healthcare for themselves or their loved ones.
She is also passionate about healing through movement and has taught group fitness since 2002. During her daughter's moyamoya diagnosis, treatment, and recovery she experienced and witnessed the healing power of movement both personally and for her daughter. She created a gentle exercise schedule for both her daughter and her to practice together. And while it is anecdotal evidence, they both benefitted immensely.
Megan is honored to accept the position of Director of Caregiver and Enrichment Services at the World Moymoya Alliance. She hopes to utilize the combination of her writing and wellness skills to guide moyamoya patients and families through a confusing and painful journey.
Ray Sinsay is from “America’s finest city”—San Diego, California. He is a bilateral moyamoya patient who was diagnosed in 2014 & had EDAS surgeries at University of San Diego.
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As a former social worker, who graduated from San Diego State University, he has a passion for helping others.
Being a military brat, one of Ray’s favorite places that he’s lived in is Hawaii. He regularly visits the islands & makes it a point to meet with his moyamoya ohana.
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He is looking forward to seeing World Moyamoya Alliance grow & to contribute to it in any way. Aloha.
I’m Elizabeth Sprang, and I was born and raised in New Orleans, and currently live in Mandeville, Louisiana which is a suburb.
I started having symptoms in September 2020, noticing my smile was a little bit a symmetric on the left side. I was also having numbness in my left hand and foot. From time to time, I also noticed my left eye would feel frozen. I went to my primary care physician who ran all kinds of bloodwork which came back normal, so I want to see a neurologist. He did an MRI, and afterward, told me I had been having strokes on both sides of my brain. I was completely thrown off guard, because I had no clue as to why this was happening. I was hospitalized for a night, and more tests were run, which ultimately led me to having an angiogram in late October. This was the definitive diagnosis for my moyamoya.
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My first surgery was in January at the Mayo Clinic in Jacksonville. Dr. Rabih Tawk is my amazing Vascular Neurosurgeon.
Before my diagnosis, I had never heard of this disease. To my knowledge, no one in my family has ever had it but me. I have two children, so I would like to have them tested one day if possible. Once I was diagnosed, I immersed myself in research and educated myself so I could Learn as much about this disease as possible. With the help of Tara MacInnes, I was also educated and ultimately chose my surgeon because of her! She has been an amazing source of comfort and support to me.
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I’m the Director of a nonprofit animal clinic in New Orleans, although I haven’t worked since my surgery, and was planning on returning soon but I found out I need my left side done which I’m doing in November at Mayo. I’m looking forward to having both sides done so I can return to work and a normal life.
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Mai lives in Tucson, AZ.
She was connected to the moyamoya community when she met Tara Maclnnes during a nonprofit leadership program for national & international undergraduate students called the Fund of American Studies, Institute on Philanthropy and Voluntary Service in 2010 at Georgetown University. She has a Master of Arts in Intercultural Communication from Rikkyo University, Japan.
Mai believes in the power of nonprofit organization & philanthropy to bring people together & serve a community’s need, & is excited to be a part of the World Moyamoya Alliance founding team.
She is an English-to-Japanese translator. Her passion is to alleviate language & cultural barriers among people from all backgrounds. She looks forward to support bringing together the moyamoya community from around the world.
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Mark Thorne-Thomsen is a moyamoya survivor who is passionate about helping others. Mark was diagnosed with moyamoya in January of 2015. His surgery was performed by Gary K. Steinburg at Stanford in February of 2015.
The experience left Mark with a renewed love for life. A year after surgery, Mark enrolled and ultimately received his law degree from Texas A&M School of Law in Fort Worth, Texas.
Mark is a practicing attorney in the State of Texas and hopes to use his skills to help others in the moyamoya community navigate all the technical processes that come with a moyamoya diagnosis.
Shari Trantas is a Moyamoya patient from Blue Bell, PA - about 10 miles outside of Philadelphia.
Diagnosed when she was 28 she had bilaterally surgeries when she was 29. Shari woke up one morning in early 2003 feeling numb on her right, dominant side. Thinking she just slept funny, Shari went to work thinking nothing of it. Later that day she got scared and called her family doctor who sent her for an MRI/MRA to rule out MS. The radiologist report first introduced Shari to the term moyamoya after reporting that her numbness was due to a stroke.
After speaking with her family doctor and a neurologist at the Hospital of the University of Pennsylvania, she found Dr. Scott from Boston Children’s Hospital and emailed him to find out if he saw adults (she was 28 at the time). Shari met with Dr. Scott and subsequently had her left side operated on by Dr. Scott and Dr. Smith on 12/29/2003 and then her right side done a week later on 1/5/2004. Shari suffered a stroke immediately after her second surgery but has recovered and leads a “normal” life.
Shari first met DJ Johnson and other moyamoya patients in 2003 on Moyamoya.com before her surgeries. A couple of years later, on a trip to London, she was able to meet another moyamoya patient from overseas. Later that year, Shari and a fellow moyamoya patient, planned the first moyamoya gathering in Las Vegas in 2005.
Shari has enjoyed supporting & meeting other Moyamoya patients & families, & has attended several additional Moyamoya.com conventions around the country.
In 2011, Shari planed and coordinated a Moyamoya.com convention in Philadelphia. She has been a part of Pennsylvania's moyamoya support group since its inception in 2013.
Through the World Moyamoya Alliance, Shari looks forward to being able to help plan more gatherings and conventions for moyamoya patients, along with empowering moyamoya patients and their families through the sharing of knowledge, education and mutual experiences.
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Tammy Wake resides in Waco, Texas.
Her daughter, Arianna, was diagnosed with Moyamoya in 2003. Around this time, Tammy connected with DJ Johnson and other moyamoya patients/families through Moyamoya.com.
Sadly, Arianna passed away from complications following surgery in 2004. Since then, Tammy has stayed connected to the moyamoya community, raising awareness and supporting others in their journey.
Her participation in The World Moyamoya Alliance will not only allow her to continue supporting patients and their families, it will also provide the opportunity to educate and spread awareness, particularly to those involved with children. Tammy hopes to utilize her training and education skills to arm others with knowledge to properly advocate for themselves and others.
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Jennifer Warren lives in Chestertown, MD, and is a long-time advocate for her daughter, Daphne, who had moyamoya disease and Neurofibromatosis type 1. Daphne passed away at age 17, due to complications from Neurofibromatosis, a genetic disorder that causes tumors to grow on nerve pathways.
Jennifer’s healthcare advocacy began when Daphne was only weeks old, suffering from a severe form of epilepsy called Infantile Spasms. After Daphne was a little over a year old, she suffered two strokes and was diagnosed with moyamoya disease. Doctors thought little could be done, and Daphne was sent home on Hospice.
Through research and connecting online with others in the moyamoya community, Jennifer discovered Daphne was eligible for lifesaving surgery with a surgeon who specialized in moyamoya. Without a community of moyamoya advocates, along with the outreach and assistance they gave, Daphne would have died as an infant and would not have received the surgery that gave her many more years, and many more cherished memories.
Being a parent or caregiver to someone with multiple significant health diagnoses is a challenge, especially when those diagnoses are considered rare and are still little understood by many in the medical profession. Jennifer is passionate about bringing more awareness to both moyamoya, and its connection to Neurofibromatosis, and she is excited to be part of the World Moyamoya Alliance and the goals of education, research and improving lives of those with moyamoya.
Jennifer has a degree in English/Secondary education, but being a mother and caregiver has given her the greatest education and experience of all.
Valerie Williams is from Belton, Texas which is a small town in Central Texas.
She quickly needed to become a moyamoya advocate when her daughter was diagnosed at the age of 10. When her daughter first began exhibiting symptoms, it was difficult to obtain a diagnosis due to limited knowledge of moyamoya by medical professionals.
Since this time, it has been her mission to educate as many individuals, both medical professionals and others, of moyamoya and pediatric stroke.
Her experiences as a Special Education Teacher and as a Licensed Specialist in School Psychology Intern, can help others from the moyamoya community navigate through the education system. She enjoys reading, running, and spending time with her dogs during her free time.
Valerie is looking forward to being able to further support the moyamoya community and educate others through the World Moyamoya Alliance.
Mae C. Zaragoza is from the “west Texas town of El Paso” (ref Marty Robbins for the song) and was diagnosed with moyamoya after being airlifted to the center of excellence, Barrow Neurological Institute (BNI) in Phoenix, Arizona in June of 2017. Dr Peter Nakaji, MD, performed the indirect brain bypass unilaterally (one side) on the left side of her brain.
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It was after Mae’s extended time away from home, and in her return to El Paso, post brain surgery, that she felt the absence of the awareness, knowledge and support for moyamoya in her Texas community. Through her own drive to find connection with other moyamoya patients that Mae found this embracing community and gave her hope, again.
This group gave her the courage to move through the previously unknown hurdles of moyamoya, how ever large and have a support base through it all. This included returning to her career as a pharmaceutical sales representative traveling all over the southwest.
Utilizing her skill set in sales and networking has provided Mae with the experiences to connect and help those that are not as comfortable in reaching out for help with moyamoya.
With her passion for inclusivity and positive motivation, Mae applies this ethos in helping those with moyamoya, in however she can help.
She is looking forward to bringing awareness of this disease to the mass public; and hopefully, change and possibly save lives with this recognition.
My name is Amy Zorn and I live in Maplewood NJ, a close suburb of NYC.
My daughter Nicolette was diagnosed with Moyamoya after suffering several strokes in August 2016. She had left-side surgery in October 2016 at Columbia Presbyterian Hospital in NYC. Her surgeon was Dr. Edward Connolly and her neurologist is Dr. Randolph Marshall.
Both sides of her brain are affected and she goes every 6 months for a transcranial Doppler to monitor the progression of the disease. She is now 29 years old and works in the city leading a normal, full life of a single woman. Nicolette does not like to be reminded of her condition so I try to be as informed as possible so that I can help her make decisions regarding her treatment.
I hope I will be able to help others in our community as well.
Deanna Zuber is from Morris County, NJ where she resides with her son.
She is a unilateral moyamoya patient who was diagnosed in September 2018. Her symptoms included an abrupt headache, mild aphasia, blurred vision in her right eye, loss of balance, dizziness and pain on the left side of her neck and jaw due to occluded bloodflow on the right side of her brain. These symptoms lead to an ischemic stroke on the upper left side of her body which fortunately did not cause any neurological deficits however required surgical treatment to revasculize the right side of her brain.
Her neurosurgeon, Dr. Gary Steinberg of Stanford Health performed an intracranial and extracranial (EC/IC) bypass in November 2018. Her surgery was a great success and continues a daily regimen of taking one 81mg of Bayer aspirin to support the health of her bypass.
Deanna is a long time employee of Bayer Consumer Health specializing in eCommerce sales for their drug channel business. She has her B.A. in Sociology with a concentration in Social Media Marketing. She is also a member of the John Maxwell Company to help others as a coach, mentor and motivational speaker. She enjoy spending time with her family and friends, cooking/baking, traveling, staying active and continuing her passion for dance. Formerly a dance competitor, teacher and choreographer, she now adjudicates national dance competitions in her leisure time.
Deanna is honored and excited to support the World Moyamoya Alliance in our mission to advocate and educate others at a global level.
To learn more about Deanna's story, visit: