RAYNAUDS ASSOCIATION INC

Rating: 4.88 stars   8 reviews

Issues: Health, Cancer

Location: 11 Topstone Road Redding CT 06896 USA

Mission: The Raynaud''s Association was founded to help Raynaud''s sufferers cope with day-to-day activities for maintaining or improving their quality of life.

The organization is committed to:

(1) Member Support Services - offering sharing, support, and education to fellow Raynaud''s sufferers.

(2) Increasing Public Awareness of Raynaud''s - so more sufferers recognize the symptoms and seek treatment.

(3) Helping the Medical Community Research Treatments and Potential Cures for Raynaud''s - through patient recruitment and, eventually, funding for research.


Programs: Updating patient-information web site. Look being refreshed for the first time in five years to feature new logo, updating graphic layout, adding new user content, improving navigation, better integrating site with new forum software, adding search capability (including newsletters), improving search optimization, and adding sponsor seals and banners for contributing manufacturers.

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Community Reviews

Rating: 4 stars  

I'm very glad I discovered the Raynauds Association. Any question I have has usually already been answered by others in the Forum, if it hasn't, answers are always quick and useful. I love the support, the tips and the easy to understand information. I have recommend family members to the site so they can get answers in laymans terms instead of medical terms.

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?

Quite well

When was your last experience with this nonprofit?

2013

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Rating: 5 stars  

This is a really valuable resource for those of us who suffer from the condition.

I have learned so much about causes and, most importantly, how to prevent attacks from the site.

Reccomendations of effective products are also valuable.

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?

Quite well

When was your last experience with this nonprofit?

2013

Was this review helpful? 
Rating: 5 stars  

When I was diagnosed with Raynaud's six months ago, I knew nothing about this disease but needed information. My online research led me to the Raynaud's Association website which provided information on the numerous symptoms, medical research, tips and information of products that help protect a Raynaud's sufferer. I have since purchased some of these products and they truly help me deal with this disease on a daily basis. I am also very thankful for their Facebook page and website forum that provides advice and information from others and reminds me that I am not the only one with this condition. Without the Raynaud's Association I would not have a useful resource for information nor would I know of the great products like my Volt Heated slippers. I appreciate all that this Association does, they are awesome!

Will you volunteer or donate to this organization?

Definitely

How much of an impact do you think this organization has?

Life-changing

When was your last experience with this nonprofit?

2013

Was this review helpful? 
Rating: 5 stars  

I have been a member of the Raynaud's Association since 2005. I became a moderator on the discussion forum shortly after joining. It is so rewarding to interact with others and support fellow frosties who are seeking a diagnosis and treatment. Many people with Raynaud's are seeking help and information about Raynaud's. This website provides products, information and support to sufferers.

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

I don't have any suggestions.

Would you volunteer for this group again?

Definitely

For the time you spent, how much of an impact did you feel your work or activity had?

Life-changing

Did the organization use your time wisely?

Very Well

Would you recommend this group to a friend?

Definitely

When was your last experience with this nonprofit?

2013

Was this review helpful? 
Rating: 5 stars  

I have" suffered" with severe Raynauds for as long as I can remember...... (Walking to primary school at 5yrs old and hiding my hands when I got there because other children would say, "ERRh, what`s wrong with your fingers?")
At Middle school, out-door PE lessons were extremely painful and difficult but I always thought everyone else had the same thing. They would say their hands were numb etc so I didn`t know what I had for many years. I often went to lessons with my tie covering buttons which I had been unable to fasten after cross country. I would drag one dead foot around school for an hour after PE too walking as if I had had a stroke. When I was at High school, I was diagnosed with Raynauds. I was relieved in a way to know that I was not as pathetic as I thought I had been.......... struggling with outdoor activities. (There was a reason).
I am 45 now and have still not learnt to live with it. I can have an attack indoors - by touching something metal like the hoover. I can also have an attack walking to the car or back. Shopping is a nightmare...... the freezer/fridge isles in shops kill me. I usually struggle to the car and have to sit inside with my hands over the heater vents, often in tears until my hands `come back` and then I can pack my trolley into the car. (Someone will run off with my shopping one day!)
I get vibration-white-finger from the lawn mower too. It is not just a winter thing either. There are different KINDS of cold that can get your small blood vessels contracting. Only someone with Raynauds would understand that statement! You don`t even have to `feel` cold yourself to have completely dead hands and feet.
I have tried everything......Ginger etc, running on the spot to get my circulation going before I go outside, lifestyle changes.......nothing helps. I was prescribed a pill from the doctor once, but the side effects worried me as it would dilate blood vessels in my heart and brain too so I never took it.
When people talk about cold places or skiing holidays they dont understand that I CANNOT "GET USED TO THE COLD" toughen-up !!!!!! It is a reaction to the cold that causes blood vessels to spasm...... not a case of hardening up!
I have tried to play in the snow with my children in the past and actually had such a prolonged attack that my nose and tongue have gone numb too and I have felt close to fainting.
I have been known to have a couple of dead fingers on a beach in Spain due to a change in breeze direction!
This awful winter of 2012-2013 I have SUFFERED!!!! I can only describe the attacks as a numbing of multiple fingers and toes. This is debilitating and embarrassing leading to fingers feeling like they have been stamped on (broken) then wrapped in lead tubed so you have no actual feeling but pain. When you can actually access warmth, you get the navy blue "Grazy-Paveing" effect before the excruciating pain of the dark red pins and needles which last approximately 30 mins.
NOBODY KNOWS WHAT WE GO THROUGH. X
(PS.......I would be a very willing guinea pig for any possible cure - effleurage@hotmail.co.uk.) Jo Evans

Would you volunteer for this group again?

Definitely

For the time you spent, how much of an impact did you feel your work or activity had?

A lot

Did the organization use your time wisely?

Quite well

Would you recommend this group to a friend?

Definitely

When was your last experience with this nonprofit?

2013

Was this review helpful? 
Rating: 5 stars  

I was very happy when I found the website. I have learned quite a bit (I didn't know there was Primary and Secondary Raynaud's, for example), I have found a lot of helpful suggestions, like what types of gloves other people have found helpful, what supplements people have used that seemed to help them, etc. My healthcare provider has not been very helpful at all, (when I took one medication he prescribed it had AWFUL side effects for me and I thought I was going to die!) and every winter I seem to struggle more and more with the cold. Since this is not a very well understood problem in the medical community, and the cause is not understood, it is wonderful to be able to bounce ideas around online with others who understand the problems.

I've personally experienced the results of this organization in...

Yes. See above.

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

I am quite happy with the services it offers right now. Can't think of suggestions.

Was this review helpful? 
Rating: 5 stars  

Raynaud's Syndrome is, at least for me, a debilitating condition and the general public does not know about the disease or how painful and frustrating it can be. In other words, it is nearly impossible to get sympathy or empathy!

Raynaud's Association was a godsend for me when I found it - I finally had a support group and no longer felt so isolated. The newsletter includes medical research developments, advice from members, suggestions for helpful heating products, etc. There is also a forum where members can support and advise each other, and that is so helpful and comforting in a world where most of the public have never seen the word Raynaud's before, let alone pronounce it.

The Association fills a true need and certainly makes me feel much less isolated. I also appreciate the advice and just the reminder that I am not the only one with problems. I highly recommend joining and/or supporting the group.

Will you volunteer or donate to this organization?

Unsure

How much of an impact do you think this organization has?

A lot

When was your last experience with this nonprofit?

2011

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Review from Guidestar
Rating: 5 stars  

I found the Raynaud's Association about a year ago, when I was diagnosed with Secondary Raynaud's. I have found the site to be a great source of education, information, and support. I learn more from people that are going through similar situations, than the medical field that seem to not have a keen understanding of the symptoms, and how drastically it can effect someone's lifestyle and functioning. Having the insight of other's that experience the same condition is extemely helpful and beneficial. I have usued many of their idea's and suggestions, as I struggle with the changes that have affected my body. I purchased a pair of battery operated gloves, that were suggested on the Raynaud's Page, specifically because of the recommendations that I read on the site. Those gloves got me through the winter, and allowed me to enjoy the activities in my life that I do. I refer to the site often and regularly.

I've personally experienced the results of this organization in...

gaining insight on way's to cope with Raynaud's

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

I currently do not have any suggestions

Was this review helpful? 
Review from Guidestar