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August 29, 2014

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August 29, 2014

I am now a volunteer for DYNA but prior to that I was a client served for many years. DYNA has been there for young people with dysautonomia since the very beginning. When I was first diagnosed, over a decade ago, there was no help for me. My medical team tried, but they were still finding their way themselves, so all I got was a packet of pills and a name for my condition. When I meet dazed and confused newly diagnosed patients now, when they find their way to DYNA, we have advice and information to give them, but more importantly - we have HOPE to give them. How do we know there's hope? After all, there's no cure, no one single treatment protocol that is effective for everyone… we know there's hope because we've been there all this time, watching young patients grow up, watching treatments being developed, and we were the ones that tried and tested them.

Now I get to give back to this organization that helped me so much and it's truly a joy and a privilege to see young people supporting each other and helping each other live their lives. DYNA is so much more than a resource for families with young people who have dysautonomia. DYNA *is* a family for young people who have dysautonomia! Please read some of the other reviews on here so you can see what I mean.

If you are reading this review while you decide where you should make your charity donation - please consider DYNA. Dysautonomia is difficult to pronounce, you might not know anyone with it, you may never have heard of it! But your money will be used to help change lives. This illness can be like a bomb that hits families. DYNA is the place that shows you that you can still live through this, rather than just exist.
January 23, 2014

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Review from Guidestar
January 23, 2014

As a middle school student, I was always sick with something, whether it be a migraine or a more serious issue like reoccurring ovarian cysts. And as I got older, my problems continued and grew worse. I went to my pediatrician, neurologists, a gynecologist, an endocrynoligist, cardiologist's, etc. Basically, if you can think of a type of doctor, I went to it! I spent numerous days in the emergency room when my mom, a nurse, didn't know what else to do for me. The doctors would take one look at me when I walked in, and immediately take me back to a bed (because they always said I looked terrible!). There was always a handful of labs to be taken and the typical rundown of tests they wanted done, which ALWAYS came back normal (with the exception of a couple minor labs that would be off here or there; my Calcium and other vitamins that could be fixed by taking a Multi-Vitamin daily). So at the end of the day, the nurses would take my saline IV drip out, and send me home, because they couldn't find that anything was wrong. I went to my local hospital, 2 different Children's Hospitals, and my local Urgent Care for help and I didn't find it. By the time I was a Sophomore in High School, I had to go on home instruction half-way through the year. I began having bizzare episodes that at the time, I called my "zombie spells" because I felt like I was almost outside of my own body and in a twilight zone. See, what would happen is my body would just randomly stop, my pupils would dilate, my jaw clench and I couldn't swallow (so I would choke and spit up saliva) my fingers and toes would curl, my body would stiffen and contort, and during all of this, I was unable to move or communicate with others, yet I could hear what was going on around me. It was the scariest thing I had ever experienced, and it was happening nearly every day. These spells resembled seizures, which run in my family, so of course I was tested immediately. Negative. Of course we were happy to know that I wasn't having seizure activity, but now we didn't know where to go from here! I even had doctors tell me that I was faking and it was all in my head because the tests were coming back negative and they couldn't understand. Finally, after searching the internet for days and just wanting to give up hope, my mom came across a podcast for a Dr. Blair Grubb in Toledo, Ohio on POTS. After watching the podcast, my mom was in tears because she was just so amazed at how the illness he had described, was so similar to what I had! She was so sure that she had finally found the answer we had been searching for! She immediately called my doctor and asked him for a referral to see Dr. Grubb. There were a couple steps I had to take first, such as being diagnosed with POTS, which I did at Cleveland Clinic with a tilt table test. And from there I was able to make an appointment with Dr. Grubb a few months later. In the meantime, my mom did a lot of research on how I would cope with this illness, that was essentially turning my life upside down. That is when she found DYNA.
I will admit, when she first mentioned joining an advocacy group to help cope with my illness, I really thought she had lost her mind! In fact, I didn't even consider it for well over a month! At the time, I didn't understand that their really could be other people out there with such similar situations and be so supportive and encouraging! In my mind, I was thinking, "Those people are just hermits who sit at home on their computers!" For one, I really regret thinking that; how horrible of me! And two, the people I have met through DYNA are some of the most down to earth and coolest people I've ever met! When I finally came around and became a Youth Ambassador, I realized just how amazing this organization really is! Everyone there cares about each other like family. DYNA also gives reliable medical information, which is so important with so much false information out in the world today. Their website gives a list of liscensed medical doctors who specialize in treating patients with Dysautonomia, as well as numerous articles about Dysautonomia. DYNA has always been an organization who serves to help people, and they do a great job at it! They have made me hopeful that I will recover from this chronic illness and make people more aware of dysautonomia in the process.

Ways to make it better...

If I had to make changes to this organization, I would...

Have more people to get involved and help raise awareness for Dysautonomia. I would raise money by fundraising, donations, etc., so the organization can stay running and continue to help youth who are battling this illness. DYNA is doing everything possible to make these changes with your help!!

More feedback...

How would you describe the help you got from this organization?

Life-changing

How likely are you to recommend this organization to a friend?

Definitely

How do you feel you were treated by this organization?

Very Well

When was your last experience with this nonprofit?

2014

January 4, 2014

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Review from Guidestar
January 4, 2014

DYNA helped me find a knowledgeable doctor to treat my Dysautonomia (POTS). As a DYNA Youth Ambassador I have grown through my illness. Not only does my physical health continue to improve, but my outlook on life is greatly enhanced by the positive atmosphere DYNA fosters. DYNA is the only online resource I trust 100% for accurate information; this organization is backed by a medical advisory board which includes top doctors in the Dysautonomia field. I first joined DYNA in 2004 at the age of 15 and as I near my tenth anniversary, I know it with all of my heart that that decision has had the largest impact on my life than any other. In a week I move to University where I will live independently for the first time in my life. My goal is to work with organizations like DYNA and share from my experiences with disabilities. DYNA has saved my life and DYNA is helping me to live my life.

Ways to make it better...

If I had to make changes to this organization, I would...

Increase funds

More feedback...

How would you describe the help you got from this organization?

Life-changing

How likely are you to recommend this organization to a friend?

Definitely

How do you feel you were treated by this organization?

Very Well

When was your last experience with this nonprofit?

2014

October 20, 2013

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October 20, 2013

DYNA rocks! After being diagnosed with dysautonomia following almost a year of being an ill mystery patient, I read about DYNA online and decided to join their Youth Ambassadors program. It has been so wonderful to meet all these people with the same struggles as me, and to exchange support with them. Donating to this organization means keeping alive a foundation that connects ill youth and offers help for us in a world that doesn't understand dysautonomia yet. I am blessed with many "healthy" friends, but DYNA friends are able to truly sympathize with each other because we all know what it's like to go through dysautonomia. Thank you to all who are considering donating!

More feedback...

How would you describe the help you got from this organization?

A lot

How likely are you to recommend this organization to a friend?

Definitely

How do you feel you were treated by this organization?

Very Well

When was your last experience with this nonprofit?

2013

November 27, 2012

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Review from Guidestar
November 27, 2012

DYNA is a wonderful organization that has completely changed my life for the better. I have had dysautonomia for over 12 years, and DYNA is the first place where I was able to find some normalcy in my life again. For almost seven years, Debbie Dominelli, the organization, and all the Youth Ambassadors have helped me gain my life back by giving me tips on coping, living with dysautonomia, as well as providing me with invaluable friendships. The expertise, professionalism, and support are the best out there, and they are the only organization I would trust for accurate and reliable information . DYNA is medically endorsed by leading professionals in the field and focused solely on getting all individuals on their road to recovery. Every penny donated goes directly back into the organization, and I have seen first hand the amazing work this organization does. It has given me the confidence, tools, and knowledge to get my life back. I went from being completely homebound to attending college and now working, and I can honestly say I have DYNA to thank for getting me where I am today!

More feedback...

How would you describe the help you got from this organization?

Life-changing

How likely are you to recommend this organization to a friend?

Definitely

How do you feel you were treated by this organization?

Very Well

When was your last experience with this nonprofit?

2012

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