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VeDA Ambassadors

Become an Ambassador for Vestibular Awareness

The goal of the Ambassador Board is to engage patients and professionals in raising awareness about vestibular disorders within their communities and among their social networks.

Hands holding cairns

You can make a difference! Join us to help raise awareness about the challenges of living with a vestibular disorder.

Complete a Volunteer Application and Ambassador Agreement

 

What is a VeDA Ambassador?

An ambassador is an enthusiastic and dedicated vestibular patient or professional, or the family member of a vestibular patient, who is interested in sharing his or her time and expertise to help elevate awareness for vestibular disorders. As an ambassador you are passionate about our cause and committed to keeping abreast of new, relevant issues that may impact the vestibular community. 

What does an Ambassador Do?

VeDA Ambassadors participate in four (or more) suggested activities per year:

  • Create a personal campaign page for Balance Awareness Week
  • Post on your social media page (FB or Twitter) once a month
  • Share VeDA’s Facebook or Twitter posts twice a month
  • Blog about vestibular disorders twice a year
  • Create a Pinterest board(s) about vestibular disorders
  • Share VeDA's "Feeling Dizzy?" infographic through social media (pdf) (jpg)
  • Distribute VeDA promotional materials (brochures, infographics and posters) to eight (or more) local places in your community, such as hospitals, clinics, senior centers, retirement communities, VA centers, libraries, etc.
  • Give a presentation to your local civic group to educate them about balance disorders
  • Start a vestibular support group
  • Add "VeDA Ambassador Board Member" to your email signature
  • Create a video and share it on YouTube and with VeDA
  • Share our Balance Awareness Week press release with local media
  • Participate in fundraising activities and seek contributions of time, money and/or in-kind support from individuals and corporate partners

VeDA will provide participants with a PR Ambassador Kit. Ambassadors will be recognized on VeDA’s website and in our quarterly newsletter. Ambassadors’ activities will be promoted on VeDA’s social media sites and online calendar of events.

Ambassador Tools

Meet Our Ambassadors

David Morrill, Ambassador Chair

davidDedham, Maine 
Diagnosis: Stroke

My vestibular disorder was caused by a stroke that knocked out the part of the brain that controls balance. During my recovery I found myself struggling with constant dizziness and balance problems. I didn't really know where to turn, until I found VeDA. They helped me understand my disorder with all the information and research they have done through the years. I knew at that time I had to give back, and focused all my energy on helping to educate the public so more could understand this disorder. The following quote sums up my entire mission.  If we speak in one voice collectibility we can "Make a Difference."


 

Lara Bishop

Surrey, UK
Diagnosis: Vestibular Migraine
Hi everyone! My name is Lara and I am a proud mummy of identical twin girls. I was diagnosed with vestibular migraines in 2012 and vestibular neuritis in 2013. My disorders have been life changing for me, trying to deal with invisible illnesses is very hard and difficult for family and friends to understand. As well as having vestibular disorders I have also suffer from GAD (General Anxiety Disorder) and depression. I have spent some time now, making some major changes in my life to help, as well as CBT (Cognitive Behavioral Therapy) and VRT (Vestibular Rehabilitation Therapy) I am so passionate about raising awareness of debilitation vestibular conditions and help support other sufferers and educate non-sufferers. Despite everything, I have a very positive outlook on life and hope to spread my positivity and motivation to others. Visit my blog at https://mummyseeingdouble.com.

Margaret Byrne

margaretMidland, TX
Diagnosis: Labyrinthitis

Hello fellow spinners! I’ve dealt with Chronic Labrythitis since 2003. I was a Certified Occupational Therapy Assistant (COTA) since 1994 working with children who had neurological or developmental delays before I was forced into early retirement by what I now call “The Sneeze” - a child accidentally sneezed on me and it also went INTO my mouth. By the end of day I was feeling quite ill and had a low fever. A week later I still felt horrible. I woke up in the middle of the night after turning over with my head spinning, and then nausea hit. After a full year of misdiagnosis by a local ENT I was sent to Dallas, where I received the diagnosis of labyrinthitis. My monster had a name! I went through almost a year of PT, which helped tremendously. That year of misdiagnosis costs me my career, my freedom, my independence, my childlike attitude, and more. Finding VeDA, and now becoming an Ambassador, is giving me new purpose and new hope. I want to share my experiences to help others, and gain insight from those like me.


Saravanan Chockalingam

vanWaterford, Michigan
Vestibular Professional
Saravanan Chockalingam [Van] PT, DPT, CLT, CYT: Van is a physical therapist who specializes in vestibular rehabilitation. He’s been practicing physical therapy for more than 24 years and focusing his treatment on vestibular patients for 12 years. Dr. Chockalingam also teaches vestibular rehabilitation internationally and participates on VeDA’s Patient Education Committee to help improve the educational materials we have available for patients.


Marissa Christina 

marissa christinaLos Angeles County, California
Diagnosis: Vertigo of the central origin and variants of migraine.
Living this nightmare for the last nine years has changed me. EVERY aspect of my life has been altered by disruptive daily symptoms. VeDA entered my life at a low point. It provided me with information that enabled me to rebuild a solid informational foundation. I felt more confident communicating with doctors and specialists. This newfound confidence allowed me to determine which medical professionals were qualified to look after my well- being and would help elevate my quality of life. I'm forever grateful to VeDA for catching my back, and I want to make sure they're around to support the next sufferer.

Heather Davies

Riverview, Florida
Diagnosis: MdDS, Vestibular Migraine, Vestibular Hypofunction, Otosclerosis, Vestibular Neuritis
I was first diagnosed with vertigo 18 years ago. In October 2016, I started to feel pressure and numbness on the right side of my head and face, as well as tinnitus and weakness. As my symptoms intensified I was forced to withdraw from school, stop driving, and take a leave of absence from work.  By the end of 2016 and into 2017 I was diagnosed with VM, otosclerosis, hyperascusis and MdDS.  I was introduced to VeDA by fellow Ambassador, Lara Bishop in her remarkable Facebook support group.  With her encouragement, I decided to become a VeDA Ambassador, to help bring awareness to the community and to offer support to fellow spinners, while I, too learn to walk in this new life.  I share openly about my journey at https://www.instagram.com/my.yummy.messy.life.

Sian Day

London, UK
Diagnosis: Migraine Associated Vertigo

Hello everyone, my name is Sian, I live in London and I've been suffering from vestibular migraines for coming up on 3 years now and it has definitely been life changing. It affected my career, partnerships, friendships. I also have suffered from anxiety, depression, insomnia and dizziness on a daily basis. The hardest part is that I look fine so people don't understand what a daily struggle it can be just to go into your local supermarket and buy a pint of milk! I wanted to be an ambassador to bring more awareness and understanding to this condition and to support others living through the same illness. I have come a long way since I was first housebound in the early days and I look forward to reaching my ultimate goal, which will be to surf again next year after a year absence. I have also created a Facebook support group.


Kayla Edwards

Cateret, NJ

Diagnosis: Migraine Associated Vertigo

I’ve been diagnosed with bilateral vestibular migraines: associated vertigo since 2017 but Ive had the symptoms for 5yrs now. It’s a battle dealing with it because you don’t know when an episode will happen.


Kelsey Flint

East Lansing, MI
Diagnosis: Vestibular Migraine
One day I was a normal college student lusting for everything life had to offer me; another day Vestibular Migraine decided to make all of my days dizzy and out me in a brain haze.  Grieving your "old" life is normal. Healing isn't easy but it makes you so much stronger and so much more resilient than you think. I never wish for my old life anymore. Fighting to get better and to have a mental clarity is so important. Mental health and vestibular disorders go hand-in-hand. We must not throw in the towel because we are only getting started!

Bobby gibbs

bobby gibbsLondon, United Kingdom
Diagnosis: Vestibular Neuritis
Having being diagnosed with Vestibular Neuritis at the age of 21, it had majorly changed my life. Not having any idea what was going on with my body at the time, and experiencing constant vertigo, I began learning ways to improve my condition and helping others to do the same. I now dedicate my time to teaching others how to improve their vertigo and provide methods that they can use for overcoming their own conditions. Learn more about what I do by visiting my website here: http://www.curevertigonow.com

Marian Groome

Dublin, Ireland
Diagnosis: Bilateral Vestibular Hypofunction

I first contracted labyrinthitis in 2010, which led to nerve damage in my inner ear. I have been diagnosed with Bilateral Vestibular Hypofunction with 19% nerve damage. My journey has been a roller coaster, but I manage this illness through daily Vestibular Rehabilitation Therapy and some lifestyle changes. I have written a book to help other sufferers, which I am about to publish, created a website and want to help in any other way I can to raise awareness for people suffering with vestibular illness.


Julie Hutchin 

Cairns, Australia
Diagnosis: Vestibular Neuritis 
I was diagnosed with Vestibular Neuritis in 2011 (a side effect of Dengue Tropical Mosquito Fever caught 30 yrs ago). I do vestibular rehabilitation therapy with a vestibular trained physiotherapist. Sometimes I thought that I would never manage on my own. I've learned to cope, but I still feel wobbly and anxious. Fortunately, I have a wonderful group of support people - I call them, My Treasures! I became a Tai Chi Instructor (Sifu) in 2007. I teach regularly twice weekly in Cairns, Australia. I previously taught Tai Chi as a Martial Art, now I focus on its use to improve balance. I was so happy I had my Tai Chi Training before the staggering began. My best personal balance is when I am teaching Tai Chi.

James Janakowski

New Fairfield, CT
Diagnosis: Acoustic neuroma, PPPD
On Christmas Eve I found out that I had a large acoustic neuroma on the left side of my brain. I spent all of January going to doctors. My girls where devastated. I kept it light and made as many jokes as possible. I had surgery on Valentine Day, 2003. It was to be 4 hours but ended up being 12 hours. When I woke up I was never the same. I had to go to rehab for 6 months to learn how to walk and talk eat and drink. I was a mess. In 2015 I found out that I had another medium sized AN. I had gamma knife surgery on Valentine's Day, 2013. I felt ok for about two months, then my dizziness became worse, the headaches unbearable, walking impossible. I get through by keeping things positive. My motto is, never let anything get you down. VeDA motivated me and now I want to give back by letting people know we are here and help others understand what we suffer from.



VERITY joyce

Teesside, UK
Diagnoses: Menieres Disease, treated with ototoxic drugs leading to Bilateral Vestibulopathy, visual dependence/visual vertigo, Vestibular Migraines
Deaf since a baby and balance problems age 6, I was diagnosed with Menieres aged 11. Unsuccessful surgery meant I had (42!) intramuscular streptomycin injections at 17 to take out any remaining balance system but preserve some hearing. Just several months previous to this I was ranked 3rd in the World for Senior Deaf Women in 200m backstroke, but following the injections I was unable to swim without knowing which way was up. I forced my brain to learn to swim again, but never got the rankings back, which led to years of learning to deal with loss and grief. The neuro-plasticity I believe helped me on land, and kickstarted my career in physiotherapy and later psychological therapy. As such I have developed what I call a 'daily tool box' to manage my symptoms, particularly for my eyes, since my eyes affect my communication too. I am keen to encourage people to find a way to become masters over their lives, even when what they feel and see seems such a muddle, as this can make them doubt themselves and their identity too.

Amy Kuch

Houghton Lake, MI
Diagnosis: Vestibular Migraine, Meniere's disease
I was diagnosed with Meniere's Disease (bilateral) 17 years ago, as well as MAV. Over the course of these years, I lived and worked with these disorders, and functioned pretty normally most of the time. At the end of 2016, my hearing started changing. Life was like hearing through cracked speakers. I started getting vertigo daily and was off balance. I ended up having to go on short term disability from a job that I loved, which later turned into long term disability. I was devastated. The impact that vestibular disorders can have on a person can feel unbearable. I want to be on the Ambassador Board so I can help educate others on vestibular disorders, as well as coping mechanisms to help overcome the challenges associated with these diseases.

Adriana Londono

adrianaPlaya del Rey, California
Diagosis: Meniere's Disease

I am a Colombian born, self-taught cook living in Los Angeles. Being diagnosed with Meniere's disease at age 28 made me realize that I needed to focus in clean and healthy cooking using the best and freshest ingredients to be able to manage my Meniere’s and prevent other illnesses from developing in my body. I published a Meniere’s cookbook in November of 2015 where I share the recipes that I help me manage my symptoms. Please check out my video and Facebook page.


Katie Mahoney 

katie Mahoney
Woodbridge, Virginia
Diagnosis: Vestibular Neuritis
 I was diagnosed in July 2013.  Since then, I have seen a lot of different doctors and been through every test known to man at least once. The frustration of not knowing what is going on and being around people--friends, family, co-workers, and medical professionals--who also don't know about this disorder is what made me want to become a VeDA ambassador.  VeDA has been such a huge help to me.  The educational materials on the VeDA website have been instrumental in helping me educate myself as well as those around me.  I have felt far less crazy since joining VeDA, and VeDA has helped me to learn to adjust to my new normal.  I became an ambassador because I want to help others with this disorder and I want to give back to VeDA for all it has given me.

Rochelle Matheson

Baltimore, Maryland
Diagnosis: BPPV, Vestibular Migraine

After suffering from imbalance and bouts of vertigo since the age of 10, I was diagnosed with BPPV at age 25. A few years and many specialists later I was also diagnosed with Vestibular Migraines. I am happily married with 2 beautiful children and live every day with hope that it will be better than the day before. I am passionate about educating myself about vestibular disorders and hope to help further research and therapies for them if at all possible.


Dawn Mlodoch

Portland, Oregon
Diagnosis: Perilymph fistula (PLF), superior canal dehiscence (SCD), secondary endolymphatic hydrops
 After seven major surgeries for bilateral SCD, PLF, a cranial abscess, bilateral hypofunction, severe tinnitus and no improvement in symptoms, I was left with a shattered life and total uncertainty about my future. Self advocacy has always been a subject near and dear to my heart. VeDA is one of the few who offer vestibular patients and medical professionals a valuable resource for education, treatment and a sense of community. It is so important for everyone to network and raise awareness by caring, sharing and educating one another.  Together we are strong and I am looking forward to engaging with VeDA and the vestibular patient community. I believe that this is how we will empower ourselves to move forward with light, love, and acceptance in a new life.

Kathleen Murphy 

kathleen murphy
Souderton, Pennsylvania
Diagnosis: Secondary Endolymphatic Hydrops/Migraine Associated Vertigo
For several years I have given daily support of sufferers and their families through my FB page, Vestibular Challenges and Loved Ones. VeDA has been a great resource for me, and I have referred other patients to VeDA's website.

 

Kelley Nunn

kelley nunn vestibular ambassadorKennett Square, PA
Diagnosis: Vestibular Migraine
I’m a graduate of Boston University, with a major in Biology specializing in Behavior & Evolutionary Ecology. In college, I studied parasitic syndromes and neurological bases for behavior in ants. I’m also wildly passionate about birds, and have been since spending 6 months in Ecuador in 2011. In May of 2014, I was debilitated by a mystery illness, and was bed-ridden for 6 months before finally discovering an accurate diagnosis: vestibular migraine/migraine disorder. All in all, I spent about 10 months in bed until I began to recover in March of 2015. I had been going downhill health-wise for about 3 years, and consulted at least 30 doctors in that time period. Now I have a blog to raise awareness about this little-known disorder.

Christy Newsome

Atlanta, Georgia
Diagnosis: Meniere's Disease (so far)
I was diagnosed with Meniere's in 2006 and have learned to manage it through yoga, diet, and other lifestyle choices. Recently, a new type of vertigo has hit me, so I am back to the doctors to find out what's going on! Meniere's has also taken the hearing from my right ear and I recently received a bone anchored hearing implant that has helped tremendously with hearing things to my right. I want to help spread awareness of vestibular disorders and to maybe help others with yoga through my blog. I am a registered yoga teacher (ERYT200/RYT500) and love teaching all types of classes, from vinyasa to restorative. While my specific type of vertigo isn't caused or exacerbated by yoga, the unreliability of when it will hit me has forced me to take a break from teaching (and driving). I hope to get back to both soon! Check out my blog at: http://dizzyyoga.wordpress.com. When I'm not vertigo-ing, I enjoy reading, music, the Atlanta Braves, traveling, and hanging out with my kitties. Wishing you fewer dizzy moments ahead!

Candice-Renee Palacio Carrillo

Honolulu, Hawaii
Diagnosis: Meniere's Disease
I was diagnosed with Meniere's Disease  after being hospitalized for a week after a violent vertigo attack.  I was only 14 years old.  Since my diagnosis in 2004 my Meniere's Disease has gotten progressively  worse and has taken the hearing of my left ear.  Through my experiences I have learned a lot about my vestibular disorder and have found ways to cope.  As a VeDA Ambassador my goal is to educate and create awareness for the debilitating illness of Meniere's Disease and to give hope to those also suffering with it.


Andrea Ramirez Maciolek

Robbinsville, NJ
Diagnosis: Superior Semicircular Canal Dehiscence
I was diagnosed with Superior Semicircular Canal Dehiscence (SSCD) in June of 2017 after four years of being misdiagnosed with debilitating hemiplegic migraines. I am a professional music photographer and music journalist for international music magazine Rock at Night. My passion of photographing and interviewing today's top rock bands came to a painful, heartbreaking halt when I could no longer take pictures due to my severe vertigo. I had my first brain surgery in October of 2017. I am still in recovery and going through physical therapy. Awareness is key with vestibular disorders and patients should not go through years of suffering, taking unnecessary medication, and being misdiagnosed for so many years. I am honored to be part of the VeDA family and to help bring as much awareness as I can. 

Joni Redlich

Sommerville, NJ
Diagnosis: Vestibular Migraine, Mal de Debarquement
Hello. My name is Joni and I am diagnosed with Mal de Debarquement Syndrome and Vestibular Migraine. I have had dizziness problems over the past 11 years and just last year figured out what was causing my symptoms. I am finally on the path to wellness that I've been looking for! In my professional life, I am a pediatric physical therapist and provide vestibular rehabilitation to children with vestibular dysfunction due to a variety of diagnoses.  I am excited to be a part of VeDA's mission to improve awareness and education of vestibular disorders!

Barbara Roggenbeck 

Edmonton, Alberta, Canada
Diagnosis: Migraine Associated Vertigo (MAV)
My dizziness, visual problems, ear and head pressure, and the complete disconnect I felt when I went to a grocery all started days after having a baby. I was in my 2nd year of a PhD program in Edmonton, Alberta, getting ready to resign from the program. I am now 6 months away from defending my dissertation, my son is 3.5 years old and is the light of my life. I made it! I owe it all to VeDA. My decision to participate as an ambassador for VeDA was because the VeDA website helped me figure out what was wrong and find a doctor. I was finally diagnosed with MAV after seeing what felt like hundreds of doctors with no answers. I have a hard time thinking about how many people suffer with a vestibular disorder and have no idea what is wrong or where to get help. I know what that feels like it. I would like to stop that cycle.

Ismail Shaheem

ismailMaldives
Diagnosis: Labyrinthitis
Hello, Good day to all. I'm Ismail Shaheem from Maldives. Today I am starting a new journey with VeDA to help and create awareness to vestibular patients around the Globe. I am a vestibular patient, in 1996 doctors diagnosed that I have left  labyrinthine lesion. I always think how can I help and give support to those who in need, disabled patients around the world,due to this horrible disease.I'm very happy that even in age 45, I'm able to do normal thing in life, In Sha Allah. Wishes you all Happy days."

Glenn Schweitzer

glennDelray Beach, Florida
Diagnosis: Meniere's disease
It was in 2011, during my senior year of college, when the vertigo first started. After suffering for nearly six months, I was finally diagnosed with Meniere’s disease. But as I began to research my illness, my heart sank. I was sure my life was over. So much of the information I found filled me with terror. VeDA, however, proved to be a light in darkness, providing me with everything I desperately needed to know. After a long struggle, I have finally been able to take back my health, and now have set out to help those still suffering as a VeDA Ambassador and through my website: http://www.mindovermenieres.com. There is ALWAYS so much hope; never give up.

Elizabeth Schneider 

ElizabethNorth Babylon, NY
Diagnosis: Vestibular Neuritis and Migraines 
I have been living with a Vestibular Disorder for 11 years now. I was first diagnosed with this at age 36, when I lost my balance, equilibrium, and had many visual disturbances. I am also a Registered Nurse (cannot work as one anymore though). I know , especially when you first get sick how difficult it is , not only on your personal life (career, money, family member stress) but just trying to navigate through the medical system  to get help, is a taxing effort at best. I decided to become a VeDA Ambassador to bring awareness to this diagnosis and to help others get the help they need!

Tamar Schwartz 

TamarDeerfield, Illinois
Diagnoses - Migraine Associated Vertigo (MAV), Vision Disorder including Binocular Convergence Insufficiency (BCI), Benign Paroxysmal Positional Vertigo (BPPV)
I posted a blog and my Facebook friend David Morrill, Chairperson of the Ambassador Board, encouraged me to be a member.  I want, through my blogs, to share my experiences living with a vestibular disorder to help people, including the medical community, understand.  I hope that better understanding will help raise awareness about these conditions. You can follow Tamar's blog here: http://visiblepersoninvisibleproblem.blogspot.com/



Tania Stadsbader 

tania
Pajottenland, Belgium
DIAGNOSIS: BPPV
I was ill at age 23 till 38. With canal plugging surgery, I got cured (6 years already!) Today I am 44 years old and I can have a normal job and do lots of sports again. I wrote a book, Dizzy Me, that is now in a second printing. With the help of fellow VeDA Ambassadors, it looks like there may be an English translation coming. You can follow my Facebook page here: https://www.facebook.com/DizzyMe.II 

 Ron Zaragoza

Antioch, California
Diagnosis: Meniere's Disease

I got Meniere's Disease in 2014. I am grateful for my doctors, friends, family and support groups/resources like VeDA, because it took a lot of time and sustained efforts to adapt to my "new normal." Meniere's Disease was a life changer for me. Although it can't kill you, it can spin lives round and round and upside down. On the verge of giving up hope of having a happy and productive life, I chose to accept reality as it existed. I got tired of fighting and I didn't not want to lay down and die. So, I poured myself back into my passion, which is music. I adopted the name DizzynDeaf and I wrote music that expresses the experiences I have had with this disease. I am truly grateful for kind people and support. I have come to understanding and believe that life is still beautiful in spite of Meniere's Disease.

 

*Prior nonprofit board experience is not required. Ambassadors are encouraged to maintain a current VeDA membership.

We look forward to hearing from you! Please complete our online Volunteer Application and VeDA Ambassador Agreement. For more information contact us at [email protected].

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