Common Variable Immunodeficiency Support Group

Common variable immunodeficiency (CVID) is a group of 20-30 primary immunodeficiencies (PIDs) which have a common set of symptoms but with different underlying causes. CVID's underlying causes are different, but the result of these are that the body doesn't produce sufficient antibodies in response to exposure to pathogens.

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Charity

Does anyone know about a charity for CVID, or would be interested in starting one?
Thanks

Replies

markincleveland
markincleveland

How about the Immune Deficiency Foundation in Towson MD.? They have been in business since 1980 and are very active with patient education meetings and research for our specific illness. They manage the PIDD disease database for the NIH and are very very active. Their national education meeting will be in Phoenix this year in June. It will be attended by over 1500 [patients, family members and professionals
deleted_user
deleted_user

I think he's right. I doubt that there is a more worthy organization for us. I do know that there is a small chapter in Michigan which I am interested in that may need some help, but you shouldn't have to look far for willing recipients. IDF does SO much. I can't imagine what a hole would be left without them. But what about the 'Daily Strength'? Mustn't they need donations as well?
markincleveland
markincleveland

As far as I know daily Strength is not a charity. It is a for profit venture started in 2006 by three guys they make money from the advertising on the site . . . . when anyone clicks on a ad they get paid.

Here is what Wikipedia says about it.

''DailyStrength is a social networking website where users provide one another with emotional support by discussing their struggles and successes with each other. The site contains online communities that deal with different medical conditions or life challenges. As of November 4, 2007, DailyStrength has created over 500 support groups focused on issues such as depression, divorce, parenting, and a wide variety of cancers.

The site is free for members and the members are encouraged to remain anonymous. The site provides members with continual support as someone is always available to talk. Medical professionals are also available to contact and treatments for a variety of illnesses and problems are also listed on the site.

The company was founded on August 3, 2006 by Doug Hirsch, Lars Nilsen and Josh DeFord and has offices in Los Angeles and Santa Cruz, California, USA. Hirsch was one of the first employees at Yahoo and previously built products for online communities there and at Facebook. Hirsch founded the company in response to his own difficulties dealing with a death in his family as a teenager.

Over the six-month period ending June 2007, DailyStrengths market share increased by 95%, with the average user spending over 26 minutes on the site. As of September 2007, DailyStrength had 14,000 average daily visitors, each spending 82 minutes on the site and each viewing approximately 145 pages."

My nephew owns / runs a website with a similar business model, except it is specific to one large condition / community, They are doing very well with it.

Thanks for inspiring me do some research on them. It is a very interesting enterprise.
deleted_user
deleted_user

Awesome, I'd say. Who knew?

Thanks for putting in the time.