After my diagnosis, being the first in my family with Fabry Disease was scary. I had never heard of the disease before, nor had I knowingly met anyone else diagnosed with it. As I researched, I came across FSIG and NFDF, both of which were incredibly welcoming and provided me with valuable information about the disease.
The first conference I attended, just a few months after my diagnosis, was hosted by NFDF. There, I met so many others with the same condition and learned a great deal. Knowledge is power, and having access to information gave me peace of mind.
The second conference I attended was the following year, hosted by FSIG. It was insightful and different from the first, providing entirely new information that built upon what I had previously learned.
Both FSIG and NFDF make a tremendous impact on so many lives, and I am incredibly grateful for the difference they have made in mine.
Thank you for all that you do and for your continuous fight and support for a cause that affects us all.
I met Jack Johnson, the founder of FSIG, in my mid-20's and I'm now 52. It has been great resource to have all these years. Keeps me very informed on all the developments in the treatment of Fabry and managing my own health issues.
FSIG is more than just an informational group about Fabry Disease.
It connects patients and caregivers to a compassionate group of experts, doctors, specialists, and industries to discuss and learn about this disease.
It has been a life saver.
Upon learning of our son’s rare disease diagnosis, our family was overwhelmed, scared and lost. FSIG became a ground zero for us to learn of Fabry, resources, community, and vital support we desperately needed. I mean it when I say FSIG helped me learn and keep me afloat in developments to support our son along this journey.
A heart-filled thank you to FSIG for the dedication to support families in their darkest hour rippled with release and uncertainty. FSIG made the new norm transition so much more smoother.
FSIG has been very helpful to my son and me since our diagnosis in 2012. FSIG has provided us with a lot of information about Fabry Disease. FSIG has answered any questions or concerns we have had over the years. FSIG has given us information about studies, clinical trials, and the latest treatments for Fabry. FSIG is really just the BEST.
Jerry and the whole FSIG team go the extra mile for people living with Fabry disease! Bringing us together as a community means the world to me as a parent of 2 daughters with Fabry disease! I don’t know how I would handle raising them without this team! They bring our little Fabry world together so my daughters have people they can turn to and ask questions besides their dad who doesn’t necessarily know the answers when it comes to girls! Thank you!!!
It's hard living with a chronic, progressive illness, but Fabry Support Information Group (FSIG) makes it more manageable. The staff is wonderful and so very supportive and helpful. The conferences are educational and provide much needed support. I rely on FSIG to keep me updated on the latest research and treatments. My journey with Fabry would be a lot harder if it weren't for FSIG. I highly recommend getting in touch with this nonprofit if you or someone you know has FABRY.
This is a very rare disease, so there is not a lot of outside support for people who suffer from it. FSIG (Fabry Support Information Group) succeeds in making people with Fabry Disease feel supported and less alone. They help people emotionally as well as financially. Their work is unparalleled in the Fabry community and I know people with the disease are incredibly grateful for all they do.
FSIG is an extremely helpful non-profit which as been serving the Fabry community for a very long time. Through emails, newsletters, webinars, local events, etc., they are constantly keeping the community informed about new studies, recent medical updates, mental health recommendations, etc. The organization interfaces with all drug companies doing research on Fabry, as well as attend key domestic and international gatherings to stay completely up to date on anything and everything related to Fabry. In summary, FSIG is a lifesaver to Fabry patients, caregivers, and family members of patients!
As a person with Fabry FSIG helps us stay informed and up to date with everything. They are friendly and very helpful!
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My sister(Lisa) works for this organization and is doing a fabulous job! My Dad was a Fabry patient for many years until he passed away last year(2019). We need more nonprofits like this to help raise awareness of diseases that are not as well known. We also need to more scientist to help find a cure for this.
FSIG has never turned me down when I needed help to get to my appointments in Seattle, WA. We have stayed at the same hotel for 5 yrs. The manager always compliments about how loving and kind FSIG is for helping us each year. THANK YOU for being there for us!
FSIG has been a huge source of information and even encouragement to my family over the years. Jack and his team are constantly updating everyone with the latest news for the Fabry community. The information cards are just one of the many aids that FSIG has that helps Fabry patients talk to new doctors and nurses. I personally have had many ask to make copies of the card. FSIG arranges meetings where we can interact with other Fabry patients and also doctors and other experts in the field of genetics. These meetings are especially helpful and important to families with a new diagnosis of Fabry Disease. You could read a whole library of books and it would not take the place of person-to-person contact and FSIG provides that.
FSIG has provided consistent and, literally life-saving, support to our family throughout the past two decades. The organization is run with integrity, trust, and genuine caring, three characteristics vital to those of us living in the rare disease community.
Without this nonprofit I would be uninformed about whats going on in the fabry community. I don't get out much and forget to ask my Doctor questions I have. But FSIG seem to alway bring info that I need.
FSIG has created a generational community with Fabry patients. I remember when it was founded and my dad was so hopeful that he was not alone. It has been a major influence in my life in keeping me connected with others and up-to-date on the newest research and medical advances. And will continue to offer the changing needs of my teenage children in living life well with Fabry.
FSIG will never know the true impact it has had on my life. Asking me to volunteer opened my eyes and gave me my spark back for nonprofits. Thank you for all you do for the Fabry community!
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FSIG has provided so much support, it is beyond words! There efforts to support and educate have truly made a difference in the Fabry community, not to mention playing a key role in engaging with the pharmaceutical community, and pushing forward for new research into cutting edge medicine to discover new drugs, and ultimately a cure. Without FSIF, the Fabry community would not be what it is today.
My husband of 35 years of age had his 3rd stroke in May of 2012. He was sent to Barnes Jewish Hospital in St. Louis, MO. It was there where he was finally diagnosed with Fabry. The doctor being a stroke specialist did not know much about this disease except for what he found on the internet. Worst case he would have 5 years to live. That evening I came home and read up on the disease as much as possible. My 2 sister en-laws and I all found the FSIG website and telephone number. Tired of reading about it I called the number. I spoke with Jack Johnson. While telling him about my husband and what he was diagnosed, I was not aware that Jack too has Fabry and 49. When he told me, it was a relief to speak to someone that KNEW what my husband has and understood. Jack sent us all kinds of resources, drove to our house to speak with my husband. My husband has had 2 more strokes since and 2 possible TIAs. Jack calls to check on my husband. My sister is having a benefit auction for my husband. FSIG has donated bracelets to sell to help raise money to help my husband. Jack has also been a great support for our family by e-mailing with family members. Without Jack we would not of had the correct up to date research on the disease, know of doctors to get in contact with, know of informational seminars that are available and know of other people that suffer with this same rare disease. Thank You So very much FSIG you have been of great help in our journey with this disease. You gave us hope when we thought there might not be. Thank you and God Bless.