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MdDS Foundation

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Nonprofit Overview

Causes: Brain Disorders, Health, Neurology & Neuroscience Research

Mission: To support research leading to the cure and treatments for Mal de Débarquement Syndrome.

Results: The MdDS Foundation has funded clinical research and studies at UCLA, LIBR, and OMNI at OU. Results are published in the biomedical literature listed on our website at https://mddsfoundation.org/biomedical-literature/

Programs: • Research grants • Educational material including a website and informational brochure • Patient advocacy support groups

Community Stories

44 Stories from Volunteers, Donors & Supporters

8 Suzanne M.3

Board Member

Rating: 5

When my daughter was diagnosed, the MdDS Foundation became a lifeline for our family. The diagnosing ENT directed us to the website. It is the ONLY source of comprehensive information about this baffling condition. I was so impressed with their website and the help it provided I contacted them about becoming a volunteer. From that experience, I committed myself to joining the Board! The board members are hardworking, all volunteers; dedicated to funding research, supporting patients, and educating the medical community -- all in the name of solving this hideous puzzle and ending the suffering of people afflicted. The board members are wholly invested in the mission of the foundation and I'm proud to work with such dedicated people.

Client Served

Rating: 5

When I was first diagnosed with MdDS back in 2003, I felt alone, miserable, and didn't know where to turn for help. Then I found the MdDS Foundation. I was able to read the stories of others who were suffering with this malady and find suggestions for ways to deal with it. The day I found the website and read that there were others who were dealing with similar symptoms to me, I began to cry. It was such a relief to know that I wasn't alone. MdDS is the kind of disease that makes you feel like you might be losing your mind. I was able to use the site to compile a list of doctors who were open to helping, medications that had been prescribed and their potential effectiveness and other suggestions for helping to calm the seas. I did research for several months and then was able to find a doctor locally to help me. It was a great help to go in with my bag of research that was inspired by this website. I have never completely beat this disease, but I am in a manageable place. I will always be grateful for the help I got when I was desperate that first year.

Review from Guidestar

Client Served

Rating: 5

I was lucky to get a prompt diagnosis by a physical therapist in our community who had completed specific training in this area. She was able to help me decrease the severity but the symptoms remain persistent. I was so thankful to find the MdDS Foundation as I was doing research on how to help myself. It was so difficult for me to describe the feelings I was experiencing and there it was in black and white. I was not crazy and knowing that there were thousands of other people dealing with similar problems lessened the anxiety and stress for me. The information the Foundation provided was a life line to hope and acceptance.

Review from Guidestar

1

General Member of the Public

Rating: 5

The MdDS Foundation is a wealth of information for us rockers. I went on a plane trip in 2014 and my next 2 years were full of doctors visits, misdiagnoses, and fear of what I was experiencing. Once I was finally diagnosed and found this Foundation, I knew so much more than the doctors had told me.

I'm still struggling to not let MdDS run my life, but I know through the Foundation I have the resources, and support needed to educate my peers and doctors and make it through this journey.

Review from Guidestar

2

Volunteer

Rating: 5

I’ve had MdDS for 6 years now. I was so lost and felt so alone in this illness until I found this group. The brochures they sent me for free to give to the doctors and friends were so helpful. They’ve answered every question I’ve had and are just unbelievably invaluable. I don’t know what I would have done without this group especially in the beginning years.

Review from Guidestar

2 Carmelina P.

General Member of the Public

Rating: 5

The MdDs Foundation has helped me cope, find doctors, and have hope as I travel my own MdDs journey. It has a caring community and strives to provide the visibility needed so this terrible condition is better funded and understood. Awareness in the medical community must grow. This Foundation has done most if not all of that work.

Review from Guidestar

2 Szilvi H.

Volunteer

Rating: 5

Thank you for all the informations about this strange and scary condition!

Review from Guidestar

2

Client Served

Rating: 5

Th MdDS foundation has been a huge benefit as I help my daughter navigate the symptoms of Mal de Debarquement Syndrome. We have learned so much about triggers, solutions, suggestions for caregivers and valuable advice on living with MdDs.

Review from Guidestar

2

Donor

Rating: 5

What a terrific website. This organzation provides critical service and support to those suffering with MdDS. This organization is there for so many people who have no where else to turn. It is the most comprehensive place for families to find help. Keep up the great work.

2

Board Member

Rating: 5

This all-volunteer organization seeks cures for MdDS (a rare neurological disorder) and provides vital information to newly-affected patients and their families. For those with persistent MdDS symptoms, group support is available through the Foundation as are updates on current healthcare practices. The Foundation also supports biomedical research to advance improvements in MdDS diagnosis, treatment, and prevention. With hope, we strive to improve lives for those affected with MdDS.

Review from Guidestar

Previous Stories
6

Board Member

Rating: 5

This Foundation originated with the single-handed, inspirational efforts of Roger Josselyn; his wife Marilyn developed MdDS following a river cruise. The all-volunteer organization has unceasingly focused on supporting those with the disorder, improving awareness among professional caregivers, and raising funds to enable biomedical studies designed to improve MdDS prevention, treatment and diagnosis. Greater awareness has aided many. Research is underway. MdDS Warriors remain crucial to these efforts.

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4

Volunteer

Rating: 5

MdDS Foundation has been a go to resource for this rare and incurable syndrome. They are science and common sense driven while always having an eye toward making sure not only that good and accurate information is disseminated but that there is support for those who suffer and have no where to turn. The Foundation understands the myriad issues such as access to care, promoting good research and providing advocacy and mentoring to its members and end users. They have been a lifeline when members are adrift and alone looking for answers.

Previous Stories
6

Volunteer

Rating: 5

MDDS Foundation is there to share the best information about this rare syndrome that can be found. They support good science and researchers who are looking for a cure while offering realistic support for those who suffer. For those who have MDDS it’s easy to fall prey to the latest gadget or pill that people claim will fix you but the foundation is clear in their mission to be unbiased clear thinking voice in the wilderness.

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2

Volunteer

Rating: 5

MdDS Foundation is run by volunteers many of whom have Mal de Debarquement Syndrome (MdDS). They provide information on this rare disease, raise funds to support research and host a private facebook group and email group to enable those with MdDS, and their family members to communicate and encourage one another. The Foundation provides an invaluable service for those suffering from MdDS throughout the world.

2

Client Served

Rating: 5

Thank goodness for this organization’s website and information. I would not know what was happened to me.Keep up the good work.

2 Deborah Cordero Yulfo C.

Client Served

Rating: 5

Great website I appreciate all the information! Started my rocking journey and July and still going. I wish there was a cure and better research. I wish doctors understood more about what causes this.

Review from Guidestar

3

General Member of the Public

Rating: 5

I went to Hawaii in 2013 at the age of 45, this was my first time there! I don’t know if it was the airplane or the boats?
I found an ENT withIn Kaiser through this website ...she diagnosed me ...finally a doctor that understood ...while all other doctors thought I just had anxiety & left me feeling hopeless....it’s been over 6 years now and I have never been in remission. I keep active and walk or hike over 4 mi a day ...if I’m moving I’m not thinking about my rocking!

Review from Guidestar

3

Volunteer

Rating: 5

My MdDS started at the age of 70 and was triggered by an earthquake. I was one of the lucky ones, I only saw two doctors before I received a diagnosis. The ENT only knew what it was not how to cope! The MdDS organization gave me the knowledge I needed to cope and some day( soon I hope) they can give me and all the warriors a cure

Review from Guidestar

3 Seri T.

Client Served

Rating: 5

This nonprofit organization keeps themselves immersed in all MdDS news and announcements. They are always there to help new people when they are just first experiencing symptoms. They direct them to the right direction and are a brilliant and reliable resource for long term MdDS sufferers.

Review from Guidestar

3 Tiffany H.2

General Member of the Public

Rating: 5

Information from the MdDS foundation is the only reason I have found a diagnosis and am able to manage my symptoms. Like many I was being passed around from specialist to specialist with no one understanding my problem. I was exhausted, it just got worse and worse. I was researching online and found information on this syndrome through the MdDS foundation, and knew right away it was exactly what I was suffering from. I searched for a doctor familiar with MdDS and after 4 hours of testing in her office I had my diagnosis and treatment plan.
We need this organization and more like it to help raise awareness, so we can get diagnosed and treated properly.

3 Karen Reunanen M.

Client Served

Rating: 5

I am 64 years old and have had MdDS (on & off) since 1992. The first episode occurred immediately following a 10+ hour airplane ride. For the first 10 years, with numerous onsets of MdDS after flying, there was no Dr. who was able ro make any diagnosis. Most treated me as if It was just my imagination. Finally, in 20005, an ENT suggested that it might be Mal de Debarquement. She did not even know how to pronounce or spell it but remembered hearing something about it in medical school and it had something to do with sailing. She knew nothing more about it. With that little bit of information to go on I started my own research & found the MdDS Foundation website. I knew instantly that MdDS was what I had been suffering from. Unfortunately, 26 years later, most doctors do not know anything about it. Don’t know what I would do without the information & support that the MdDS Foundation brings to those of us who get to live with MdDS. I consider myself to be one of the lucky ones who does go into remission but, MdDS is easily retriggered with airplane travel or car rides and episodes last months (6-9) not weeks and symptoms on on the higher end of the scale. Unfortunately, MdDS is my new normal.

2 Kathleen P.2

Client Served

Rating: 5

It’s just so amazing to finally realize that you are not alone, that there are other individuals and families out there struggling and living with this rare condition.
The MdDS foundation/website also helps to get the word out to medical professionals who are uninformed and misinformed, and gives sufferers hope that research will soon show us the way to prevention and cure.

5

General Member of the Public

Rating: 5

The MdDs Foundation has saved me. In November of 2017 I took a trip from my small town in Kansas to Las Vegas, Nevada. After a few days of airplane rides and countless elevator rides my world started swaying. It felt like the floor dropped beneath me. As I started to walk it felt like I was walking on a trampoline. It has been 9 months, and the swaying, bobbing, and rocking hasn't stopped. It is hard to concentrate, get out my thoughts, and just purely function with the physical and mental pain. I have gone to countless specialists including neurologists, my primary care doctor, a neurotologist, and several ENT's. They have all told me, "I can't help you. I think it's anxiety." A couple weeks ago my mum was doing her last resort research she could and came across the MdDs foundation site. She called me and said, "This is it. This is what you have." After more research on the site, getting in the support group on FB, talking to my physical therapist, and calling the doctors at Mount Sinai in New York it was conclusive that I was a candidate for the treatment. I finally have a name for my diagnosis. At 23 I didn't imagine I'd have a rare disorder that not many doctors know about, but honestly if it wasn't for this foundation I don't know if I would have ever found an answer or treatment. The site was able to give some information about possible treatment in New York, which is where I'll be headed in a few weeks. The foundation has inspired me so much that I am currently working with them on doing an "Instagram takeover" while I'm there to spread awareness, the process, and the life in the day of MdDs. I am also in contact about some other special projects. I just want people to know they're not alone, and this is exactly what this foundation showed me. MdDs Foundation, thank you.
-Miranda McComber, 23

4

General Member of the Public

Rating: 5

My daughter (Miranda) started illness journey in November 2017. After tons of doctor appointments and tests, we were told no one could do anything for her. I was NOT accepting that answer. One late night, I started researching rare disorders that make someone feel like the are constantly swaying, bobbing, rocking, falling. Up pops MdDS. After digging deep into all of the information on the MdDS foundations website, it was like I had my answer. We are taking a journey in October to go for treatment at Mount Sinai in New York. While the prospect of hope is there, the journey for her will be a large feat. But, like she does everything in life, she is taking it one day at a time and conquering all her fears. I am just so thankful for the foundations website. If it would not have been for finding it, I feel we would have no answers. Thanks to you all for getting the information out to the public and being there for people when doctors could not.

4

Client Served

Rating: 5

I have been coming to the foundation for support since 2008. I have had my many questions answered and always professionally and promptly. The foundation is crucial to those of us with MdDS as it is the only place we can go and know we will be understood. I cannot even imagine having this condition without the foundation existing. It is a true blessing for all of us that the dedicated individuals who started the foundation did so and that current members work so hard to keep it running.

3

Volunteer

Rating: 5

The MdDS Foundation is made up of extremely hard-working, and dedicated volunteers, most of whom suffer from this incredibly debilitating disorder themselves.

I was lucky to get a MdDS diagnosis from a doctor 10 days after my symptoms began - the ENT who diagnosed me referenced the MdDS Foundation website in order to help diagnose me.

MdDS is so much of a rare disorder that it hardly even categorizes as one, so the need to spread awareness is crucial. The MdDS Foundation works tirelessly to help achieve that goal.

3 Jill M.3

Volunteer

Rating: 5

Who? knew a cruise could cause your vestibular system to go wonky and stay that way for 2.5years. Disembarking the ship I felt pretty cruddy but I just thought it was the extreme fun we had for the past 7 days. Upon returning home via airplane I still was not feeling right very off balance and then it just got worse from there to where going the bathroom was a chore. I was hopping from doctor to doctor so unsure of what I was dealing with, my ENT suggested maybe MdDS but he had never seen a case this intense and he said, "it could be possibly 6 months till the off balance feelings are gone." At the time that felt like forever and there was no way I could possibly take the symptoms for 6 months. So he began the eliminating process- still no formal diagnosis. We decided to search ourselves and this is when I stumbled upon the Foundation. It was a blessing and I am confident if we didn't have this resource we might still be searching two years later. I am so convinced I decided to offer to volunteer for the foundation. And I am proud to say I have been working alongside another MdDS warrior completing the domestic brochure mailings. It's our only resource and only way of finding others to discuss symptoms and remedies.

4

Client Served

Rating: 5

The first six months of having MdDS was awful!! No Drs could tell me what was wrong. When I found this support group I found a sense of comfort knowing I could now help educate the health community about this rare disorder and help myself cope better

5

Volunteer

Rating: 5

This rare disease is very isolating so being able to read about how others are handling this affliction is very reassuring. Also, being able to ask questions of others is so useful. One of the most useful tools on this website is their Physician Referral Database so those who suspect they might have MdDS can find a medical professional to diagnose and treat them. Some people can spend months and even years trying to get an accurate diagnosis. Additionally, the Foundation raises money to support medical research into this neurological condition for which there is yet no cure or a proven theory of what causes it.

4

Volunteer

Rating: 5

This is a group of dedicated, hardworking friendly people who want to support sufferers and medical providers. We have a sense of purpose, as many of our volunteers have MdDS themselves. We make calls, send materials, post blogs, and do it all as volunteers, because this is so important! I joined because a family member suffers from MdDS. I was delighted to discover a lively, social group of people who want to make a difference!

5

Volunteer

Rating: 5

The MdDS foundation has helped me in so many ways. From providing doctor information for drs across the US that treat MdDS, to information research info and any new/upcoming research info, patient stories and just giving us a place to feel that we are not alone!

Comments ( 1 )

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mddsfoundation 07/02/2018

We hope you continue to find support as we, along with our volunteers, work to expand awareness and research opportunities.

6

General Member of the Public

Rating: 5

Having a rare disorder that most physicians have not heard of is extra challenging. The MdDS foundation has a wonderful site full of information and links to resources that extremely helpful in navigating this rocky world.

8

Client Served

Rating: 5

My companion lives with MdDS and has for many years. If this Foundation did not exist I am not sure what either of us would do. I often read the blog posts on the website to see how others are doing and there is a page on FB for the community.. And, my companion finds information and comfort in the support group.
Thank you for being there.

8

Board Member

Rating: 5

I've had MdDS for 19 years now. It is a devastating condition. I had to immediately stop work.Like so many others, I feel better in motion, but after the ride I rock and sway more.I can barely spend time on the computer, which interferes with my responsibilities as a Board member.
After several years my husband was able to set up our nonprofit with the IRS ( no lawyers).
We now have a support site, a brochure, an exciting new website, and many people are finding these and realize they are not the only ones with this condition.. We have ongoing research, which has lead to treatment, and some day will result, hopefully, in a cure!

7

Board Member

Rating: 5

I can say with 100% conviction that I was lost before finding the MdDS Foundation's website and learning more about this rare disorder. I had spent over a year going from doctor to doctor and misdiagnosis to misdiagnosis. The foundation is very unique in that everyone involved suffers from the disorder, yet takes the time to support each other, promote awareness and to raise funds for ongoing medical research. The organization's support groups are a great place for people to commiserate and share their stories. The MdDS Foundation is a small grassroots foundation, but they have raised over $1,000,000 in the past 3 years. I am certain that the foundation and the researchers they support are the best chance that we have for finding a cure for this rare and extremely debilitating disorder.

Comments ( 1 )

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mddsfoundation 07/02/2018

We hope you continue to find support as we continue to find research and treatment opportunities.

9

Professional with expertise in this field

Rating: 5

The MdDS Foundation has been at the forefront of education and promotion of research on MdDS since its inception. It is a haven for patients with MdDS who seek affirmation for their symptoms, a gathering place for building a community of individuals with an otherwise unrecognized rare disorder, a clearinghouse for the dissemination of information on new treatments, and a launching point for patients who want to be proactive in seeking knowledgeable care providers or participating in clinical trials.

Comments ( 1 )

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mddsfoundation 10/11/2017

Your comments are appreciated and your work with MdDS is invaluable.

8 Terri Brown G.

Board Member

Rating: 5

Having had MdDS since 2006, the support from the foundation’s support groups as well as the research funding has been integral to having hope for a cure. As a board member and volunteer, this organization is very frugal in the disbursement of donations as 96% goes directly to research and awareness efforts. Dr. Cha’s research which has been one of the largest distributions is critical to finding the cause and cure for MdDS. Very well run foundation that provides support for a rare disorder that needs even more awareness.