The MdDS Foundation sincerely thanks all the supporters and volunteers that helped make this a successful year. Without you, these accomplishments would not be possible. Please take a few minutes to read these highlights.
Top Media Moments
During the Rare Disease Day TweetChat with NORD and ABC, 3,212 tweets were sent with a potential exposure of 28.2 million. Joy Sheerer appeared with Dr. Travis Stork on the TV show, The Doctors, and Fay Selkrig appeared on Australian TV with Dr. Alan Pearce in “Permanent Seasickness” (viewable in AU only). Cindy Beagle educated the public about MdDS during June Awareness Month (listen here). Chris Patterson broke her silence to help others with our invisible disorder on YouTube.
Having a #RareDisorder needn’t be isolating: Find a support group. We have two! http://t.co/iXI2JMagjU #abcDRBchat
— MdDS Foundation (@MdDSFoundation) February 25, 2014
retweeted by @pfanderson to 9,618 followers
Research Report
In addition to experimental treatment taking place at Mt. Sinai, we are extremely fortunate to have a variety of research efforts taking place at Ohio University, Deakin University and the Laureate Institute for Brain Research (LIBR). Some of the research is supported by a Directed Donation; an anonymous donor requested that the monies they provided be restricted to research being conducted by Dr. YH Cha, currently at LIBR.
In 2014, the Foundation provided over $70,000 to support research into the cause and cure for MdDS. With the help of our many supporters and their donations, the Foundation will be providing another $90,000 toward research in 2015.
5 Research Papers Published in 2014, including The relationship between symptom severity, stigma, illness intrusiveness and depression in Mal de Debarquement Syndrome, a collaboration between US and UK doctors YH Cha and C. Dancey, et al.
As you can see, past donations have allowed the Foundation to support research, awareness, and advocacy events. As 2014 comes to a close, please consider a tax deductible donation to the MdDS Balance Disorder Foundation. It is easy to donate at www.mddsfoundation.org/donate/
Did You Know…?
The Foundation reads each and every message posted in its two Support Groups, made up of both men and women. Discussion and support is robust each day. Since its inception, 82,473 messages have been posted in the private Yahoo site alone. Each and every one has been read — more than 6,000 messages in 2014 — by the Foundation to ensure that members are receiving valuable insight and critical information. Learn More About Our Support Groups
The Foundation also celebrates the 10-year anniversary of being listed in the World Health Organization (WHO)’s International Classification of Diseases. Donna Hall, a dedicated volunteer, worked with Roger Josselyn and achieved this goal in 2004. The U.S. uses a Clinical Modification (ICD-10-CM) for medical diagnoses, and Mal de Débarqement Syndrome can be found under ICD-10-CM Diagnosis Code R42. The International Classification of Diseases, 10th Edition, Clinical Modification/Procedure Coding System (ICD-10-CM/PCS) has been translated into 43 languages and is used by 117 countries.1 Learn More of Our History
NEW THIS YEAR: Our very own awareness bracelet. Act fast if you want one, as supplies are limited. All you need to do is send an end-of-year donation of just $20 and we’ll send you one as a Thank You gift to the U.S. address associated with your PayPal payment. You’ll also receive the 2014 version of our brochure, fresh off the press.
Donations and contributions are tax-deductible as allowed by law. The MdDS Balance Disorder Foundation is an all-volunteer, non-profit 501(c)(3), and annual overhead costs are less than 4%.
Milestones: 400 subscribers to the official website which had visitors from 201 countries; 249 Twitter followers (54 new, including Vestibular Research
@reedvestibular); 1,700 members in the private Yahoo Group; 1,160 members in the private FaceBook Group; 1,357 public FaceBook page fans. Help us to reach our goal for the year of 1,500 – LIKE US!
2015 Resolutions
We look forward to continuing to provide funding, support and other services to the MdDS community. These include:
• collecting more data through the new survey
• further collaboration with clinicians to encourage research both in the US and abroad
• updating the database of doctors that are able to diagnose MdDS.
CALL FOR VOLUNTEERS
Are you able to volunteer at Slide the City in July? We need 50 people to help make this event happen in Harrisburg, PA. Contact Us
The Foundation would like to acknowledge the following donations made by friends and loved ones. Thank you for your care and support.
Honor Donations
Irene & Timothy Hartman – In honor of Marla Cruise for the 2014 MdDS Walk
Marilyn Koschik – In honor of Anne Rhein
Marilyn Josselyn – In honor of Marlene Epstein’s birthday
Jerry Moore – In honor of Melissa Pickering
Donations in Memoriam
Marilyn Josselyn – In memory of Donna Hall’s brother, Mel
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To make a donation “in honor of” or “in memory of” designated individuals or occasions, please use the Memorial or Honor Donation Form (downloadable PDF) and mail to:
Marilyn Josselyn, President
22406 Shannondell Drive
Audubon, PA 19403
Alternately, you may use Pay Pal or Click and Pledge, and use the comment field to leave a donation dedication. Your dedication will be recognized in our next newsletter and acknowledgement post.
Hi, Joann, I live in Baton Rouge and have had MdDs since November 2015. I haven’t been to doctors because from the research I’ve done, it seems pointless. The tests and trial and error seem frustrating and time/money consuming. I keep hoping I will wake up and be normal again. Love and hugs.
I haven’t been on our website in a few years since I felt discouraged. This is my eighth yr with severe mdDs syptoms. I just noticed donations made in honor of Maria Cruise, what’s the story last I read or communicated with her she was very encouraging so just last week I sent her an email as I am at my wits end. I am totally useless with my rocking always between 8-10. I live alone since my husband passed away in Oct 2012. Desperate to talk to someone with a little compassion since I think I’m the only (person in) Baton Rouge, LA with this disability and NO Doctors to help me here.
Hi, Joann, I live in Baton Rouge and have had MdDs since November 2015, I went on my 1st and only cruise, wish I would’ve never gone. I have not been to any doctors because from what I’ve researched, none can help me here, and I don’t have the time or the money to waste on the tests they do as a process of elimination. And I do not want to take medication if at all possible, so I cope the best I can. I keep hoping one morning I will wake up and be symptom free. I can function, but it’s been discouraging and frustrating. Love and hugs.
In saying that the Foundation reads every message, what value does that add? Unless a member is contacted personally (in a positive manner), I don’t see the why that comment is necessary.
Chris – Leader MdDS Australia.
Thank you so very much to the volunteers and foundation board members!
I hope your seas are calm and here’s to more great work in 2015.