The holiday season is upon us, which is a great time to reflect on the past year and look forward to the future. My heart is filled with gratitude for the outpouring of support we’ve received from the vestibular community this year. Thanks to you, VeDA’s ability to help vestibular patients has grown immensely.
With your support, VeDA has increased our capacity to help vestibular patients through proactive outreach and advocacy. This year we hired a new staff member, Tony Staser, who hit the ground running by organizing our most successful Balance Awareness Week ever. We also recruited 6 new members to our board of directors, and launched our first ever advocacy committee.
I would like to share with you two inspirational stories from VeDA members:
From Cindy P. in Portland, OR
“I thought being diagnosed with vestibular neuritis in 2008 would just be a bump in the road, but it completely changed my path. As my vertigo and nausea finally subsided, I was overcome with sound and light sensitivity, along with just about every other migraine symptom. My headache was constant. I suffered through nearly 40 medications that failed me and sometimes had frightening side effects. This year I began treatment with new doctors and was diagnosed with bilateral superior canal dehiscence, which required two craniotomies. I’ve been thrilled with the progress I see every day. I’m not there yet, but I will be. And as rough and sometimes hopeless as the past 5 years have been, it’s made me so very resilient – and that will always be a part of me. The information on VeDA’s website has been invaluable to me in my recovery.”
From Lora B. in Tulsa, OK
“In 2008 I experienced an episode of profound spinning and dizziness. My primary care physician casually diagnosed me with BPPV and told me that there was no treatment other than meclizine, and that I should get used living with it. I became increasingly and painfully sensitive to light, shadows and noise. My world was shrinking as I became more and more fearful of venturing outside, and my anxiety was constant. I started reading everything I could find online about vertigo – that’s how I found VeDA. Their information about vestibular rehabilitation gave me a glimmer of hope. I took the rehab info to my ENT. He snorted and said that he didn’t tell me about it because most people don’t stay with it long enough for it to be effective. I can’t express the anger that rose up in me when I realized that he was aware of a treatment but withheld the information from me. I found a physical therapist that specializes in balance disorders. Within one week I knew it was working. Today, am I thrilled to have my life back. I occasionally have “wonky” days, but I have the tools to take care of it. VeDA was the door that led to my recovery.”
VeDA relies solely on donations and membership fees to support our operations. I hope we have helped you with our educational resources, provider directory and Facebook community. Now we need your help! Please consider making a donation today so that we can continue to improve and expand these vital services.
I’m so very proud of what VeDA has accomplished this year, thanks to your support. Here are just a few milestones from 2013:
- VeDA Support Group Network (VSGN) Launched: The goal of the VSGN is to provide resources to existing support groups while facilitating the development of new support groups – already 6 new support groups have been started! • Resource Library expanded: We’ve added 5 new publications to our free online resource library.
- Patient Diaries, Logs & Medical History Form: We’ve added 7 downloadable patient tools to our website’s educational resources that help patients keep track of their symptoms and prepare for their doctors’ visits.
- Balance Awareness Week: This year we educated more people than ever before about vestibular disorders! Our press release was published in 337 media outlets with a combined reach of over 23 million readers. VeDA members held 37 events across the globe and distributed over 1,500 posters and publications.
Over the past year VeDA has helped over 1.2 million people find information and support.
With your help, we will continue developing resources that form the bedrock of support for vestibular patients, including:
- Growing and expanding our provider directory: More medical provider listings on our website results in faster diagnosis for patients. We also recognize the value of complementary care and are adding alternative specialties, including mental health counselors.
- Improving outreach to undiagnosed patients: Millions of people suffer from dizziness and other vestibular symptoms without knowing that there is help available. VeDA has reached millions with interviews published in the Wall Street Journal, the Guardian, and other major news sources.
And that’s not all. With the launch of VeDA’s advocacy program we will be partnering with medical practitioners to help remove obstacles to diagnosis, while developing a prospective study to collect baseline data so we can track our progress.
You can help by making a gift to VeDA’s holiday campaign today.
When I hear about the challenges faced by people like Cindy and Lora – months and years struggling with dizziness and migraines, with medical doctors dismissing their symptoms or just prescribing more and more medication – I’m saddened, but also motivated to do more so that other patients don’t have to suffer without hope.
Your donation will make a world of difference to patients suffering from dizziness, imbalance and other vestibular symptoms.
Wishing you a happy, safe and joyful holiday season.
Cynthia Ryan, MBA
P.S. We recognize that you have many choices when deciding which charities to support. Please will you make a donation to VeDA? Your gift enables us to advocate for people with vestibular disorders. All donations are tax deductible.