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Searching for others who run non profits

Posted by Linda Hageman, RN @hagm04, Apr 7, 2013

I am searching for others who run non profits and or who have started a non profit because of Mayo Clinic Social Media Network. I started a non profit for a rare genetic mutation disease called Multiple Endocrine Neoplasia. We are in our 7th year and have grown greatly in the past year. Let’s share our experiences, what works and what doesn’t work. It would be interesting to share ideas with others who have started a non profit or any others that have information that will help us non profits succeed. Linda Hageman, RN

I see your original post was a few years ago, but I'd be interested in connecting with you. I just started a non-profit for Isolated Congenital Asplenia (ICA), which is a rare genetic mutation. Children with ICA are born without a functioning spleen and therefore have a compromised immune system. ICA is often undiagnosed, revealed only after a child contracts an infection, develops sepsis and dies, usually within hours of first presenting with a fever. Our mission is to raise awareness of ICA and contribute funds to medical research. I'd love to connect, if you're still active with your foundation for Multiple Endocrine Neoplasia.

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I started a nonprofit in 2005 for a health-related condition and grew its social media assets and engagement significantly over the years. Please let me know what kind of help you are looking for – is it nonprofit management issues or digital health communications or something else?

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@lyndagmitchell

I started a nonprofit in 2005 for a health-related condition and grew its social media assets and engagement significantly over the years. Please let me know what kind of help you are looking for – is it nonprofit management issues or digital health communications or something else?

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Thank you for your reply. I'd be interested in exchanging ideas about nonprofit management. As you said in your original post, sharing ideas and information about nonprofit success, relating to other nonprofits, understanding the ways nonprofits can positively impact the rare disease community. Thank you.

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Hi all. I am late to this post and while have not begun a nonprofit I was in nonprofit management for the second half of my work career. Did a stint as Exec. Dir. of a small organization with most of my positions in fundraising and marketing. One position was in healthcare with a specialty hospital. Happy to talk, share, brainstorm, etc. if I can help in any way. Cheers

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I’ve looked at your site and I love your mission Linda.

You know, there is one possibility for someone like @DanHinmon to consider: As a Mayo Social Media experiment is there a way to host a 1 hour online brainstorming session for you, where the Mayo Social Media Network could bring in 5-6 people for a 1 hour effort? We have had teleconferences before for things like conference planning (usually proceeded by a simple email agenda). You also could post a list of your top three questions with links to your site and I bet you would get some easy, actionable ideas.

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I like this idea, @matthewrehrl. We have hosted a couple of Zoom calls where we join on Zoom, record the session, have someone to give a 5-10 minute introduction on a topic, and then invite everyone on the call to share their ideas. Are you willing to participate @IndianaScott @lyndagmitchell @hagm04 and @team4travis? I'd also like to bring @KimberlyGDATF into this conversation.

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Yes, I'm willing to participate, thanks!

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Sure. I’d be willing to give it a shot.

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Hello – I'd be happy to participate! I actually met a colleague of Linda's a few weeks ago while exhibiting at a meeting for endocrine surgeons!

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I would love to participate as well. My community work has been related to pulmonary hypertension awareness and also cardiovascular health.

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Hello everyone I am still the Founder and Executive Director for American Multiple Endocrine Neoplasia or AMENSupport.org I would be interested in sharing the highs and lows of the non proifit world. Would be interested in a monthly meeting or webinar as I am sure many non profits are found through Mayo Clinic. Linda Hageman

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Looks like we need to schedule a Zoom call @hagm04 @drkatherineybrown @KimberlyGDATF @IndianaScott @team4travis @lyndagmitchell @matthewrehrl. How about June 25 at 2 pm CT? I can host this first call and we can discuss topics and ideas for regular participation. We'll record the call and add it to our MCSMN archives. How does that sound?

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Sounds good to me! Thank you for setting up this first call Dan.

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@DanHinmon

Looks like we need to schedule a Zoom call @hagm04 @drkatherineybrown @KimberlyGDATF @IndianaScott @team4travis @lyndagmitchell @matthewrehrl. How about June 25 at 2 pm CT? I can host this first call and we can discuss topics and ideas for regular participation. We'll record the call and add it to our MCSMN archives. How does that sound?

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Works for me. Scott

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@IndianaScott

Works for me. Scott

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Date looks good for me, in fact I may be at Mayo Clinic on that date, Dan

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