Amazing charity impacting the lives of millions of people around the world living with FSHD. They have made significant strides in funding research, pushing for a treatment by 2025.
Everyone at the FSHD Society are a God send! I have received more useful information and guidance on treatment in the last year (since discovering FSHD Society) than I had in the previous 30 years since I was diagnosed. My outlook has never been more positive since becoming involved with this group. I am blessed to be a part of this group. Amazing individuals that make up an amazing organization!
The FSHD society has helped to educate me and guide me through the next steps both for myself and to advance research for the future.
The FSHD Society has given hope to our family members whose quality of life was being slowly taken away by their weaknesses. Thank you is not enough!
The amazing thing about the FSHD Society is the way it is educating patients and their families on how to live with this debilitating disease. The outreach and community has made all the difference in the lives of our family members.
This organization is helping to advance the therapy development for FSH Muscular Dystrophy, and has helped my family immensely. I am so grateful for them.
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I am 11 years old i work at my grandpa's house with my single mother an i got really inspired by your way to help the community so i was wondering if you could help me learn about it to help get better instructor in homes.
This non-profit has been a life saver to me. It has been a great resource and community for all of my questions and concerns. I was diagnosed with FSHD many years ago and this non-profit is a safe place for me.
Have been involved with/known of The FSH Society for years. I am third generation diagnosed with FSH. The support, research, information and pure hope the organization gives to those affected is immeasurable. I am grateful they exist and hope others will find them and us a worthy charity to invest their time or money in.
The webinars seem to always be timely, with experts in various fields as presenters.
I was diagnosed in 2011 by Dr. Tawil, the FSHD Society continues to be an excellent source of information. I appreciate the updates on research trials.
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Out of the blue, when as a teenager the sky was her only limit, our daughter got diagnosed with FSHD. It was a shock to learn that this progressive chronic deterioration was something she could not out run ; nor would it allow her to stay the competitive athletic girl she was, whispering all day long with horses. She was facing this feeling to be helpless in her own body.
Joining the FSHD Society provided us with both information and resource, and great support among its global community. The way we discussed groundbreaking research lifted our spirits and stimulated our hope for the future. A large door opened to a new community and a new purpose. Dealing alone with this disease can give a feeling of abandon and loneliness, especially when your teenager wants to keep it confidential. Having a community to share the experiences makes a world of difference. Meeting people who went trough similar yet different challenges and working towards a future with hope convinces us that future can still be bright .
After digesting fear, rebellion and frustration, our daughter decided she could no longer feel sorry about herself, but had to cope, stand up, be involved and accomplish a mission of spreading hope. Thank you FSHD society for your very personalized contact ;-)
I first learned of this non-profit many years ago when attending one of the early walk 'n' roll events on Cape Cod. I have been supporting this charity ever since. It plays a critical role in bringing researchers, patients and supporters together, and has resulted in tremendous advances being made over the last few years in particular towarda a treatment and hopefully someday, a cure. Always very highly rated and respected, driven by a team of very dedicated people.
The FSH Society has filled such a crucial
need for patients, families, and scientists. We are on the road to a cure and it is thanks to the the tireless work if the FSH Society.
The FSHD Society has been instrumental in joining the local and international community of like-minded individuals dedicated to finding a treatment and cure for FSHD. The FSHD Society has provided a supportive platform for the growing number of state chapter groups across America, training for the Chapter Directors and Walk and Roll Leaders, and keeps members and the public up-to-date with the lasted developments in research and relevant information. I can't say enough good things about the FHSD Society. Because of their hard work, dedication, and knowledge, the hundreds of thousands of us impacted with this disease have a hopeful and optimistic future.
I learned my husband and son had FSH muscular dystrophy late in 2017. Our family had never heard of this type of MD. We were familiar only with the Jerry Lewis telethons of our childhood. I contacted the FSH Society (going forward the FSHD Society) and was profoundly impressed with its expediency in responding to my call for help. Everyone associated with the Society is caring, professional, and goes the extra mile for patients and their families.
Over the past two years we have been extremely involved in advocating and building awareness of FSHD and with the Society’s help have started a Chapter here in Columbus Ohio and are making preparations to hold our 2nd annual Walk & Roll to Cure FSHD.
The FSH Society (FSHD Society) publishes an extremely educational and reader-friendly newsletter called The Advocate and offers countless ways to learn about the disease, become connected with others who are dealing with the disease either through diagnoses or support roles, and get involved in advocacy through its Chapter program and fundraising opportunities.
Its President, Mark Stone, is leading the charge to fund the most promising research from around the globe. Funds received are spent efficiently and transparency in where the dollars are allocated can easily be located on its website.
The gene causing this disease was identified in 2010 and we are impressed with the urgency and collaboration by those working on treatments and a cure as opposed to competition and secrecy. I owe that collaborative culture to Mark Stone and all who work on behalf of this disease.
Incredibly supportive community for patients and families, working hard to advance science and find a cure. Very impressed with this organization and every person I have met who works with them!
When my husband was diagnosed with FSHD the FSH Society immediately provided many great resources and a fantastic support system. The educational opportunities and local chapters have been fantastic as well. We're happy to see how much progress has been made in research thanks to the FSH Society's management of funds.
My extended family is heavily affected by FSHD and yet there was so much I did not know about it. I have learned valuable information through the FSH Society videos, newsletter and Facebook page. They are truly committed to helping the community through funding research and providing information. I know my donations to them are put to good use.
When my husband was diagnosed I found a lot of great information on the FSH Society website. They are an amazing organization who’s goal is to raise awareness and funds to find a treatment/cure for this debilitating disease. The Walk & Roll event was so fun & successful! Everyone was kind, helpful & understanding.
This non-profit was a God send to me when I was diagnosed! I have been the biggest supporter/advocate and ambassador since 2014!
When my daughter was diagnosed at age 18 months I was scared! I contacted the FHS Society and they was so helpful❤️
Un grupo muy activo y apasionado. En el Día Mundial de la Distrofia Muscular Facioescapulohumeral (FSHD) del El 20 Junio son protagonistas y desde Argentina el grupo MostrArte ADM nos sumamos. Es increíble ver el crecimiento de la organización en los últimos años.
The FSH Society is an advocate for patients and their families. The Society has outstanding ratings from several firms which rate non profit financial efficiency and effectiveness. It continues to fund cutting edge research. It also hosts conferences for researchers, clinicians and pharmaceutical companies worldwide to coordinate information and research . Its small staff and volunteer Board of Directors are committed to delivering a game changing drug by 2025.
Great organization helping people with FSHD and their families, with research, knowledge and support. With help a cure will come.
When I was diagnosed with FSHD I was lost confused didn't know where to turn for answers. My family even had a hard time relating to what I was dealing with. Then I found the FSH Society. A light in the dark. Place of support. A place for good, quality information. I quickly raise my hand to volunteer for the society. And for the past 2 years I have been the host for the FSH Society Radio Show. Thank God for this place.
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Very supportive and passionate group of individuals. It's incredible to see the organization's growth over the past couple of years.
A wonderful charity that helps so many people with FSH.
The FSH Society gave me the opportunity to meet with dr.s that know exactly what I have. They also gave me the opportunity to meet another FSH’er for the FIRST time. I am 52 years old.
I am from the land downunder, Sunny Queensland Australia. I live with FSH and I myself advocate on behalf of my FSH friends and family. It doesn't matter where you live .... what matters is that we all join together as one voice and raise the awareness of this devastating disease and how it affects us all.
Raising awareness and funds is FSH Society's mission and I've had the pleasure of connecting with the society and fellow members to help them get their message heard. The FSH Society is growing stronger every day and I believe with their dedication, understanding and respect for all who live with this disease, together, we, the world of Fsh'ers will find that cure.
Hi I always like to read about FSHD muscular dystrophy. My husband has been diagnosed 2 years ago After battling with walking and pain for over 10 years. Finally he was diagnosed by a neurologist in Barcelona. They did the muscle biopsy and other tests and it was confirmed. He walks with difficulty and to go out we use the wheel chair or the scooter. Keep up Gad good work.
The FSH Society is leading the way towards a cure for FSHD while building a strong community. Their communication, organization, leadership and heart truly set them apart!
As a parent of a son with FSHD this has been a valuable source of information and support. This disease is a form of muscular distrophy and many times hard to diagnose. When diagnosed it is overwhelming trying to find out what to do, what the future will bring, how to handle it, how others have found ways to endure, and what kinds of hope there is for the future. This is such an important resource.
The FSH Society is a lifeline to information and support for all of us dealing with this disease. I’m so very appreciative of the dedicated work they do on our behalf.
The FSH Society is focused on research into a treatment for FSHD, while building a community of FSHers, who are actively involved with a search for a treatment. It is the clearing house for information, research projects that we are able to participate, meeting up with others with FSHD & the researchers, fundraising for more research & learning to live with FSHD. It has set the gold standard for research grants.
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After 35 years of active sports, all those little things that made movements more difficult became really difficult. I had to stop swimming because I could no longer get my left arm out of the water. To brush my hair, I had to sit down & put my head between my knees, as I could not raise my arms high enough to brush. When I was dx'd, the FSH Society had not yet come into existence, but 2 years later, I spoke to Carol Perez and met her at a patient/researcher conference. I was no longer alone, there were others at various stages of FSHD. This was a lifeline for me, a source of knowledge that continues to grow constantly and is the leader in seed grants to promising ideas. Daniel has been stepping in for Carol's patient advocacy, in addition to his other jobs like testifying before Congress on the need for additional funding for FSHD at NIH.They have set the standard for all the other FSHD groups around the world and there are many.
The FSH Society is doing a wonderful work advocating for the need for FSHD related research, the advocate for the community, and raise awareness for the need of a cure.
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The FSH society is a supportive and informative non-for-profit organization, that puts its patients' needs first. They work towards research and advocacy for FSHD, and do it well. They are always their with answers and helpful information, keeping up with ground breaking research as well as with listening and understanding the community they serve.
My family appreciates the great support, both social and medical, from the FSH Society. The goals and research focus of the society are clearly stated and the plan to execute these goals have already been launched. Amazing indeed.
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The FSH Society provides understanding, resources, research and (best of all) hope to patients and families with FSH Dystrophy.
We are honored to be part of The FSH Society Family. My husband has the disease and 4 members of my family had/have the disease. With 2 kids of our own, we are highly motivated to help find a cure. The FSH Society is the catalyst of many research studies and partnerships between different research agencies across the world so that all information can be shared. How amazing! The Society is a great resource for information about FSHD. Their 5 star Charity Navigator rating tells you that they spend their money wisely with most of it going to charitable causes and very little going to administrative expenses. We participated in a local fundraiser and the president of the Society came to our event. What terrific support they give to their local chapters that are spread across the country. What an amazing organization!!
The FSH Society has been connecting patients to important research and education for over 20 years. Their strategic planning has been instrumental in moving this community forward towards possible treatments for this debilitating disease that impacts close to 1 million persons worldwide. Patients and their families build personal connections to researchers and each other that improves well-being and gives hope to all. Thank you FSH Society for supporting the FSHD community!
A great resource to go to in time of need, and a beautiful community that was built around a shared wish and vision. Always helping, up to date on all related fronts. I find the FSH society a prime example of a nonprofit organization that puts its patients first.
I am not a sufferer but I have been involved with the FSH Society for five years. During that time, I have been continually impressed with their work towards finding treatment and a cure for the terrible, debilitating disease that is FSH Muscular Dystrophy.
The Society's commitment is well-evidenced not only by the breadth of patient services they provide. More importantly, their leadership in creating collaboration & communication between disparate entities in the scientific community continues to drive groundbreaking neuromuscular and genetic research, and their partnership in nationwide clinical studies of pharmaceutical treatments are already proving to be very promising.
The FSH Society is extraordinary, and inspires real and rational hope for FSH Muscular Dystrophy sufferers.
We are so very luck to have found the FSH Society 25 years ago! My husband has FSH Muscular Dystrophy. His disease has progressed over the last 25 years and we have had the support and information that the FSH Society provides during this time. We have a great community of people in Los Angeles that meet and we have formed great friendships at these meetings! We benefit from the nation wide fundraising that the FSH Society provides! They have funded Scientific studies and have helped to find the genetic marker and cause for this disease. There are now clinics and Neuro Physical Therapy offered to people who suffer from this disease, and within the next 5-10 years we expect there will be a treatment and cure available! Without the FSH Society we would not have this connection to Hope that they offer. We give the Society our highest rating!!
Thanks June K for your tireless efforts while director and thanks for shining the light on such a dark unknown by many awful Disease. Over 90 cents on every dollar raised goes to research Treatments cures. Thanks
As a person with Facioscapulohumeral Muscular Dystrophy, I can attest that before the FSH Society existed, no one, including the MDA, was paying any real attention to this devastating disease. The FSH Society has been essential in getting research done and getting information to patients, and they do it professionally, efficiently, and effectively.
I found the FSH society through an internet search and reached out to them with questions about a relative's health condition. They were prompt in responding to all my queries over email and putting me in contact with physicians to consult. Recently, I had the chance to network with them. I have learned a lot from the society. Being a small team, they have achieved a great deal and are on a mission to accomplish a lot more. I look forward to helping them, in any way I can, to educate people about FSHD.
The FSH Society has been very helpful to me. I call them with medical questions and if they don't know the answer they will contact someone else who does. They maintain current and extensive literature about FSH for patients, families and professionals alike; whenever I go to see a new provider I always take their literature since generally the new provider doesn't know much about FSH. The Society also posts relevant information on Facebook frequently which keeps us "in-the-know" about research, trials and opportunities to be involved in FSH research as well.
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This last yr I contacted the FSH Society about a FSH related medical problem I was having and to ask for suggestions. The Director responded to my inquiry almost immediately and contacted a specialist that she knew. She got back to me with a possible solution the very next day. I was very appreciative of the way my inquiry was addressed.
very good group involved closely with the people who have this disease. to many groups do not involve people who have the ailment they support but this one is very involved with the actual people with FSHD
I have been involved with the FSH Society as a patient, volunteer and donor for many years. With a small, dedicated staff, it has spread information about this largely ignored form of muscular dystrophy, raising awareness that FSHD is one the three most prevalent types of MD. The nonprofit has also pulled together an international group of researchers to work on understanding the causes of FSHD and possible treatments. With its program of making seed grants, scientists are able to do the prerequisite groundwork needed to qualify for NIH grants to expand their research efforts. The Society continues to earn 4-star ratings from Charity Navigator for its efficiency, transparency and adherence to its mission.
The FSH Society is a well run and caring nonprofit organization. They are earnest and sincere in their approach to funding research necessary for the improvement of life for individuals who suffer from Facioscapulohumeral Muscular Dystrophy. They also carry a bright torch to Washington DC promoting issues important for funding and the challenges of those who deal with FSH everyday. I enjoy my interaction with June Kinoshita, Excecutive Director. She has been instrumental in "getting the word out".
Exceptionally well run non profit, great patient advocacy, excellent resource for referrals and information. Kudos to June Kinoshita who not only does a great job from an administrative standpoint, she is very knowledgeable of the medical and research aspects of FSHD, to the benefit of patients and their families.
Always helpful when needing information and relentless in pursuit of a cure, the Society is there to do what needs done for my son and my family. I will be grateful forever for their support.
FSH Society works tirelessly to help fund research to find a cure for all affected by FSHD. Amazing organization!!
Wonderful, targeted contemporary resource. Shared ideas help our group to understand that we are not alone.
For almost 20 years the FSH Society has been my lifeline to others with Facioscapulohumeral muscular dystrophy, FSHD is a muscle wasting disease that robs us of the ability to raise our arms to hold a baby, comb our hair or brush our teeth. Twenty percent of patients will eventually require use of a wheelchair. Offering access to clinical trials, testifying before Congress to increase research funding and providing seed grants throughout the world, the FSH Society has opened the door of hope for me. They make us all feel like family. It is for this reason that I have chosen to give back by becoming a board member and to be empowered through the FSH Society to prepare for the next generation of scientific advances. Here's to the day we can all raise our hands to the sky and firmly walk into a future with no FSHD!
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As a volunteer and patient with FSHD I am proud to be associated with the FSH Society. They are professional, compassionate and completely focused on the task of supporting patients and research for a treatment for this disease. We are lucky to have an organization that is this dedicated to helping us.
My two sons and I were diagnosed with FSHD 25 years ago. Without the support of the FSH Society, life would have been so difficult. Having everyone there be at your side whenever help was needed, questions answered was a blessing. I have seen the progress made with generous donations towards research and getting some answers for this disease. Here's to all the progress made and looking forward to the future with everyone out there willing to donate and give their time with fundraising etc.
Mimi Brown
The FSH Society has been a great support to the FSH Community and has raised money to help fund research towards finding a treatment and raising awareness for this muscle wasting disease that has been overlooked for too long. When I was first diagnosed they were a great resource in learning about the disease and connecting me to a support group where I could ask questions of and talk with others dealing with living with FSH.
As a person living with FSH, I cannot express enough gratitude to the FSH Society for their endless effort and determination to find a treatment and cure. I can wholeheartedly count on literature provided by the society to share with my doctors and community to help raise awareness and understanding on how FSH affects us. Most of the literature that is available is outdated and inaccurate, but the FSH Society provides up-to-date material on what FSH really is. They have made more headway in the area of research in the last 10 years than any other organization in my lifetime of living with this debilitating condition. Thank you FSH Society, donors and researchers....your work is appreciated and does not go unnoticed.
The FSH Society has been there for me when I needed it. It has provided me with very useful information, that I could pass onto my doctors (who were clueless). I am forever grateful to it.
The FSH Society is a dedicated and exceptional organization committed to research and patient/ family networking. The FSH Society has had a positive impact on my life and has reinforced hope for many.
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The FSH Society is a dedicated and committed group to all of us impacted by FSH muscular dystrophy. The focus on research, patients and caregivers is remarkable. The FSHD Society has made a tremendous impact to date however the work is not complete; they continue to dedicate all they have to the FSHD community and fight for a cure.
FSH Friends are awesome, they help and contain people for all over the world, they are doing a great job organization and researching for a cure, and this my friends gives us hope.
7 years ago one of my four children got his Diagnosis of FSH. I was stunned, confused, not educated. Through the FSH Society I learned more from the information provided than even his doctors could provide. Since his DX I learned that I too have it and two more of my kids have clinical signs. I use their website very frequently and print out information to give to our doctors to help them manage us. Other education materials they have I also shared with family and friends to help them understand our pain and limitations. I have met other patients and developed rich and special bonds with them. I would have never had my DX as i don't have the "classic symptoms" as my child does. It was with what i learned from them that helped me understand my own pain. The newsletters they put out I have copies of them all with me when I see new people. This organization has helped me more than I could ever say. I am so grateful for this life line. Thank you FSH Society for all you have done for bringing me some comfort as my family deals with this disabling disease.
This non profit has been a life saver for me & my family. FSHD has a 50-50 chance of being passed on to children. Facioscapulohumeral Society (FSHD) keeps us up to date on research, procedures & fellowship. It gives us a lifeline to hold onto. Other families who are having the same difficulties as we are share information. Thank you FSHD for all your help.
FSH Society works tirelessly to support those diagnosed with FSH. When I was first diagnosed, they were instrumental in getting me in contact with others near me who also have this disease. Had it not been for those contacts and emotional support I got from this community, I am not sure how I would have managed that first year alone. They make all efforts to provide current and accurate information, support research and build a community where we can share our experiences both negative and positive. It is a wonderful organization, I can't imagine dealing with FSH without them.
The Facioscapulohumeral Society provide us with great resource for individuals with FSH Muscular Dystrophy, their doctors, and their families both in terms of support and information. They are always looking for ways to help people with FSH to become a community, both online and offline. They also push towards more and more research on the topic that is then communicated by them to the wider audience. They are doing a great important job.
The FSH Society is the single greatest resource for individuals with FSH Muscular Dystrophy and their families. No other organization is as dedicated and knowledgeable of this disease- the most common of the muscular dystrophies. Executive Director June Kinoshita is an incredible asset and personally available to members of the Society. I have never had anything less than a stellar, professional and fulfilling experience with the FSH Society.
Having been associated with this organization since its inception in the early '90s, I can say with some authority that it has done more than any other single organization to advance the cause of understanding FSHD. The FSH Society has leveraged modest resources to great effect, driving new research pathways, working legislative issues, and connecting an international community of patients, advocates, and researchers. Few organizations have done so much with available resources.
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The FSH Society has leveraged a modest revenue stream to fundamentally change and advance the state of research in the field of FSH. They have executed on a nearly 20 year strategy to build a cadre of researchers focused on this important disease by providing seed funding to promising post grad students and working the political system to ensure NIH can address FSH in some way. They have shown perseverance, creativity, and savvy as they sought to build an infrastructure to understand and tackle this disease. As the years have gone by, the FSH Society has become the world-leader in gathering together researchers, patients, industry, and government to raise the level of knowledge about this complex disease. They continue to effect a range of outreach efforts to share knowledge and provide a venue for afflicted patients, their care givers, and their families to gather and convey information and learn from each other. From what I know, they've done all this with extremely low overhead and the vast majority of donations go to directly supporting furtherance of the organization's goals.
The FSH Society has served as the focal point for vetting of the science of FSHD, providing seed money for new ideas and backing the annual research meeting which has fostered a consensus understanding of disease mechanism. The society has done this with close patient and researcher networking which will ultimately enable clinical trials to proceed.
The FSH Society is a phenomenal non profit organization that especially focuses on linking the community of affected individuals and family members together. The way this is done is via social media outlets such as Facebook and Twitter. Social media allows meMyers to vent, ask questions, and connect. Personally I find this very helpful to know there are other people out there who understand what I'm going through. The other reason this organization is awesome is how involved the scientific community is about sharing the latest information. I always feel informed of the latest discoveries and always know researchers and clinicians are working hard towards finding a possible cure or therapeutic targets.
I don't know where we would be right now without the FSH Society. My husband was diagnosed with FSH Muscular Dystrophy about a year and a half ago....I was devastated and lost until I found them on the web. Their website was so friendly and so helpful to me it directed me to a page for community support. Right then and there I was able to get a phone number of someone I could talk to about living with FSHD and ask questions about how family members can support him . I was quickly put in contact with a male of the same age as my husband with very similar progression of the muscle weakening patterns. June Kinoshita was beyond helpful with her time and her empathy. After a few conversations and contacts I was able to think more clearly about what all of this diagnosis meant to us. I was also invited to join a facebook group which has been enlightening for me to learn so much for a beautiful group of members suffering from the same life changing disease. This nonprofit works so hard to make a difference for those afflicted. So many suffer and it would be so nice to have a cure.
I look to the FSH Society to research, speak up for, inform all of it's members as to new studies and findings (as they do so well). I have so much confidence in them and their urgent activity to find a cure. I really really really do not know what I would do without the professionalism of the FSH Society and my contact person June Kinoshita.
JVisco
My baby grandson has IFSH as well as Coats disease in both eyes. It is a whole, new world for us now, and this organization, which gets Charity Navigator' highest rating, is a godsend to so very many of those who are afflicted with this horrible disease, as well as to those of us who love and care for them. Cannot praise them enough!
I have been involved with the FSH society for over 10 years. My daughter and I both suffer from FSH and found the FSH Society by chance. I love June because she is always so helpful whenever I have a question about new research that has been released and I don't completely understand it or even being able to point me into the right directions of local resources to help me. The FSH Society is a great help to all of us who suffer from FSH and our families!
The FSH Society has been instrumental in navigating life after my son's diagnosis. Through the Society we have been able to network with others, learn about the latest research and studies, and gain a greater understanding of the disease itself. The Society is so helpful and reaches out to all of those affected by FSH. Their biannual conferences are simply invaluable. They work tirelessly to spread awareness and raise money for research. When you donate money, you are able to specify how you want your funds applied. I recently donated and wanted my money to go toward education and research. By giving me the option of how to use my funds, I have such a peace of mind that this charity is "the real deal." I have to say the absolute best parts of the Society are the sense of community and the knowledge of the disease that we simply cannot get from anywhere else. Most doctors have little to no understanding of FSH making the mere exsistence of the FSH Society crucial.
The FSH Society has been soo supportive of me and others who have FSHD Muscular Dystrophy. The research they help provide is the most up-to-date comprehensive and informative and will one day make our cure a reality. Thank you sooo much FSH Society for all that you do for FSHD Muscular Dystrophy!
june.kinoshita 09/17/2014
Thank you Trisha for all you do to raise awareness and build the community!
FSH Society was a ray of hope when not even many neurologists know anything more than the disease name. It is the first place that has provided very specific information about FSHD. It started with the first steps 25 years ago to get the necessary attention to this disease. It played a significant role in connecting the patients to share the information and experiences. Its collaboration with researchers along with other FSH charities around the world and funding the research helped to find the genetic cause and many facts around fshd.
As an affected FSHD patient with multiple FSHD suffers in family, I can say FSH society is a helping to keep the hope high and a reason to live waiting for a cure.
june.kinoshita 09/15/2014
Thank you so much for your kind comments. Knowing that our efforts are keeping hope alive is a great motivator to keep working harder!
The FSH Society has been remarkable in promoting and securing funding for FSH research in the US and globally. They also provide great support and empower people with FSH to connect and share information and experiences proactively and positively.
As a graduate student working on a project related to FSHD, I'm really amazed by the work being done and the passion in this organization. They not only provide support for research but also push the field forward. Connecting researchers with patients makes the scientists think more about possible treatment, and keeps them motivated in the research in this filed.
Believing that you are a healthy person, and then learning in your twenties that you have a progressive muscle disorder can be devastating. Perhaps even more difficult is knowing your children have a 50% chance of inheriting this disease, and there are no proven cures or treatments. FSHD has a history of being behind the 8-ball in terms of funding and scientific discovery. However, organizations like the FSHD Society are instrumental in fostering education, awareness, advocacy, and contributing to incredible strides in research over the last few decades.
When my mother was finally diagnosed (after years of doctors telling her an atypical virus caused the weakness in her arms), she met with the FSHD Society. She was treated with kindness and compassion and gained education and knowledge. The FSHD Society is talented and dedicated giving families like mine answers, as well as HOPE that a treatment or cure is on the brink!
I was Dx'd with FSHD in 1998 and knew next to nothing about the disease. I started searching on the Internet and found a member of the FSH Society, who invited me to a chat, and finally I was in touch with Carol Perez. I also met others online with FSHD. The following year I stated attending the conferences and really was helped by meeting everyone face to face, plus all the information learned from the researchers, physicians, guest speakers, etc. the Society (carol) put me in touch with someone near me and we co-hosted a support group. The FSH Society is invaluable in my life!
Misdiagnosed in my 50s, I was finally diagnosed after 6 Healthcare Professionals gave up. Looking back, my mother like many, never knew she had FSHD, why her arm never healed properly, or why she lacked strength and energy.
Fortunately I discovered the FSH-Society's online Support Group Forum -- (now some 1000 members and 23,000-posts since 2007). For me, the forum has been a daily society of friends sharing information, support and resources.
From the Forum's knowledgeable support from folks who've been there, I found the sponsoring FSH Society, a small grassroots group who decided to do something themselves, and remarkably has made so much happen in FSHD research, education, communication and support.
Besides The Support Group Forum, the FSH-Society has been an aggressive leader in fund-raising and funding basic research into our especially unique and interesting disorder. It's uniqueness and variability makes FSH especially interesting for research at the genetic and micro-cellular levels.
And our preliminary research is finally showing promising preliminary results -- a strong presence in a broad multidisciplinary multi-disorder attack. Now that we have preliminary results, mainstream research is finding FSHD more interesting.
Based on preliminary results, research is now at several break-out points, where we know what needs to be done; and it just takes resources to do it. Of course problems will arise; however, due to FSHD's uniqueness, each problem generally provides even more insights as to specifics of the disorders.
Besides research, our FSH-Society sponsors innovative Patient Researcher Conferences, where hundreds of Patients, Caregivers, Researchers and Organizers gather from the US and around the world, sharing knowledge, experiences and insights. Meanwhile our FSH-Society provides quality information to patients and the Research, Healthcare and Caregiver communities about numerous specific and important FSH-Care issues.
While I hate what this "damnable-disorder" is doing to my body -- I couldn't be associating with a better group of people. And FSHD is such a unique interesting asymmetrical disorder -- we have great hopes that FSHD can provide innovative insights into a whole family of similar genetic, cellular disorders.
It's an unfortunate congregation we share, but one with great promise. And now with a strong history of success, good people, and hopefully a rewarding future - our FSH-Society is in position to both serve more FSH-People, and eventually help solve the FSHD-Puzzle.
--jim_fox
I have been associated with the FSH Society since 1996 when I was diagnosed with FSH. I immediately joined the FSH Society. I met Daniel Perez several years later when I worked with him as a volunteer at a conference in Philadelphia, PA. He has been a steadying influence in my life through his efforts with FSH Society and it's newsletter by enabling me to understand my disease.
Recently I was having problems finding a surgeon willing to perform orthopedic hip replacement surgery on me due to me having FSH. I contacted June Kinoshita of the FSH Society for assistance. Through her networking of various doctors she was able to locate and get orthpedic surgeons who had successfully performed hip replacement surgery on patients with FSH. These doctors then responded to her with their medical anaylsis in medical terms and she in turn forwarded to me. I then was able to show them to my local orthopedic surgeon in Savannah, GA who agreed to perform hip relpacement surgery on me.
The FSH Society has been a valuable asset to me and I wholeheartidly endorse them. Elizabeth L. Niner, Hilton Head Island, SC
This is an organization that is getting things done. Their main focus is finding a treatment or cure for FSH MD. Because of all the cut backs in other organizations and because FSH is not as deadly funding and help seems to go to other types of MD. The FSH society is made up of doctors, patients and researchers who's main focus is a treatment or cure.
I met Daniel Perez's mother just after my daugther, Meredith, was diagnosed with FSHD in 2003. Carol was a staunch patient advocate, a kind-hearted person, and friend. Although she passed, her son keeps up the good fight and Daniel has testified before Congress on behalf of patients with FSHD more times and years than I can remember. Both of these founding members have/had the disease and that is part of the reason that they tirelessly fight/fought on behalf of patient's and have had so much sucess. We now know that FSHD is the most common muscular dystrophy and we are closig in on the gene structure. This gives me hope, even more so now that my son was also diagnosed with the disease. FSHD is a devastating disease that deserves our attention and needs dedicated and experienced folks at the helm in order to tackle it and cure it.
Do you wonder why the FSH SOCIETY has been awarded its fourth consecutive 4 Stars Charity Navigator this year?
As the world's largest grassroots network of patients with FSHD (FacioScapuloHumeral Dystrophy), families and research activists, the FSH Society has been increasing its use of ALL social media to promote awareness about the most prevalent form of MD as well as to help fund scientific and clinical research. These include: Facebook, Yahoo group forum online, Twitter, Razoo online, and Ebay charity auction sites for additional fund raisers.
As an Independent 501 (c)(3) non-profit and tax-exempt organization, the FSH Society offers many ways for patients and families to get involved in the journey to find a cure by supporting a wide variety of fund raisers throughout the country. Our most successful event raises $309K in one night!
The FSHD Biannual Patient Conference is a very valuable source of information for patients and scientists on the latest research in the USA and from other parts of the world.
These conferences are a huge support to patients and families who get a sense of a "family athmosphere" that many patients certainly appreciate. It is by going to one of these conferences that I started getting involved as a patient and fund raiser. I am thankful to the FSH Society for its fantastic work and I am proud to be part of it.
The new Executive Director, June Kinoshita, has certainly made an incredible contribution to the success of what is today an AMAZING and GROWING organization. The FSH Society website is robust and easy to use. For more info: www.fshsociety.org.
The Society raises money to fund research into curing the disease it's named for, and it does a shockingly good job. Smaller than the Muscular Dystrophy Association, it spends its money wisely by 'seeding' young researchers or unproven lines of inquiry, which after a few years' time can justify grant requests to bigger payers like the MDA and NIH. It has become a hub for cutting-edge research information due to the network it has developed, and publicizes the projects in newsletters, on Facebook and on its website, fshsociety.org, as well as gathering and publishing care-oriented news on the site, in brochures and broadsheets that can be presented to a doctor unfamiliar with the disease and its demands. It runs a Yahoo group where patients and loved ones can commiserate, laugh and share tips and tricks. Finally, it's a Charity Navigator Top 10 - all in all, truly admirable.
june.kinoshita 09/25/2014
Thank you so much for your wonderful comment. Knowing that we can help families feel less alone, and introducing them to the amazing community of patients, is very meaningful to us.