Discussions

Are you managing a non-profit? We're organizing a group to help

Posted by Dan Hinmon, MCSMN Director @DanHinmon, Thu, Jun 27 10:07am

We held a Zoom Call last week for MCSMN members who manage a non-profit. Thanks to @hagm04 @team4travis @drkatherineybrown @IndianaScott @matthewrehrl @lyndagmitchell and others we had a great discussion and we're off to a good start. I recorded the call to post here, but the file is HUGE and I need some tech help, so that's coming in a few days.

Meanwhile, I'm starting this thread to capture ideas. Whether you made the call or not, comment here to let us know what topics related to managing non-profits you'd like to discuss in our next call or in this discussion forum.

I am the communications manager for a nonprofit – may I participate or is it more executive level?

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You are definitely welcome, @kellybussanich! This group is open to anyone who wants to participate. Do you have a suggestion for an upcoming topic? A question you'd like answered?

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@DanHinmon Let’s connect to discuss whether there are particular issues that this group might like to discuss where I could bring some useful perspective to the table. This is also an open call to the group — what are your nonprofit management pain points? I’ve been on boards, chaired boards, and represented nonprofits over the course of my career.

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@dharlow, thanks for this open call. As a brand-new, grass roots organization, we have been amazingly blessed/lucky to have experts placed in our path to help with assembling a board, filing with our state, receiving IRS approval and developing a Scientific Advisory Board, social media presence and relationships in the rare disease community. Where I feel we really need help/guidance/advice is with choosing the best financial management & donor management tools or platforms. I'd also like to discuss identifying key needs for a new nonprofit. Another topic would be looking at having an Executive Director (when is this position needed, how would we find ways to fund an ED's salary). I've got so many more questions/thoughts, but I don't want to monopolize the platform. TYIA! Looking forward to our next call!

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@dharlow

@DanHinmon Let’s connect to discuss whether there are particular issues that this group might like to discuss where I could bring some useful perspective to the table. This is also an open call to the group — what are your nonprofit management pain points? I’ve been on boards, chaired boards, and represented nonprofits over the course of my career.

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Thanks so much for the offer, @dharlow. It would be terrific to have your insights. The purpose of this thread is to gather toics of interest so that we can organize upcoming discussions and phone calls. Legal will surely be one of them!

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I'm in the same category as David. I'm more able to offer perspective, guidance, or knowledge about nonprofit management, board governance, etc. I also have a health IT background and led a post-merger integration of IT systems.

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@team4travis

@dharlow, thanks for this open call. As a brand-new, grass roots organization, we have been amazingly blessed/lucky to have experts placed in our path to help with assembling a board, filing with our state, receiving IRS approval and developing a Scientific Advisory Board, social media presence and relationships in the rare disease community. Where I feel we really need help/guidance/advice is with choosing the best financial management & donor management tools or platforms. I'd also like to discuss identifying key needs for a new nonprofit. Another topic would be looking at having an Executive Director (when is this position needed, how would we find ways to fund an ED's salary). I've got so many more questions/thoughts, but I don't want to monopolize the platform. TYIA! Looking forward to our next call!

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Hi Allison Linda Hageman here. I am the Executive Director and Founder of American Multiple Endocrine Neoplasia Support or http://www.AMENSupport.org. I take no salary for the work I do, however many non profits hire a Executive Director once they are up and running and have the funds to do so. Would love to speak to you if you will email me Linda.Hageman@AMENSupport.org perhaps we can arrange a phone call.

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@hagm04

Hi Allison Linda Hageman here. I am the Executive Director and Founder of American Multiple Endocrine Neoplasia Support or http://www.AMENSupport.org. I take no salary for the work I do, however many non profits hire a Executive Director once they are up and running and have the funds to do so. Would love to speak to you if you will email me Linda.Hageman@AMENSupport.org perhaps we can arrange a phone call.

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Hi Linda! Thanks for the reply. I "met" you virtually during the June 25 nonprofit management support call Dan facilitated. I'll send you an e-mail so we can schedule a time to talk.

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@kellybussanich

I am the communications manager for a nonprofit – may I participate or is it more executive level?

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Welcome @kellybussanich ! It would be great to connect and learn more about how you’re using social media in the nonprofit world. Do you primarily use Facebook, Twitter, Instagram, etc..?

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@DanHinmon and all….. While I have a lot of experience working with nonprofits (serving on boards, leading grassroots initiatives, volunteer management, organizing events, fund development etc..) my primary interest with the MCSMN nonprofit group is to explore ways that nonprofits can be innovative in utilizing social media to increase awareness of their work.

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@drkatherineybrown

@DanHinmon and all….. While I have a lot of experience working with nonprofits (serving on boards, leading grassroots initiatives, volunteer management, organizing events, fund development etc..) my primary interest with the MCSMN nonprofit group is to explore ways that nonprofits can be innovative in utilizing social media to increase awareness of their work.

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Do you have a specific question or topic in mind, @drkatherineybrown ?

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@DanHinmon

Do you have a specific question or topic in mind, @drkatherineybrown ?

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Great question @DanHinmon
I love all of the topics that have been mentioned and see that they each have a space in the world of social media.

Examples:

Fund development. Utilizing social media as a tool for fund development to support nonprofits.

Volunteer management. Strategies to use social media to engage volunteers.

Information and Communication: How can nonprofits utilize social media as a tool to enhance communication across multiple sectors?

Etc…

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@drkatherineybrown

Welcome @kellybussanich ! It would be great to connect and learn more about how you’re using social media in the nonprofit world. Do you primarily use Facebook, Twitter, Instagram, etc..?

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I Agree Please join our group. You have a lot to offer non profits. We use Facebook and Twitter and also have our own website http://www.AMENSupport.org

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Good Morning. My name is Alma Villarreal. I am the Team Lead Administrator for a Public Support Group for Stiff Person Syndrome, which is a 1 in 1 Million autoimmune neurological – neuromuscular disabling disorder with no cure. I am an SPS patient myself. I had to officially stop working due to my medical condition. I retired officially in November 2011. I found this support group in July 2012. Our group was developed in July 2012. Shortly after I joined, I was asked to be an Administrator. We did not have an awareness ribbon. I took personal time to locate and research how to get our ribbon on the Disabled World. We have over 2150 members and we are on Facebook. This year the learning Units feature on Facebook became available and I have started gathering information from NORD, GARD, etc. Our group is @ https://www.facebook.com/groups/StiffPersonSyndrome/
We are not a non-profit but have been trying to research information about setting up an organization. This year I put more time and effort for our SPS Community and I Advocate for our SPS Patients and provide them with the information needed for any type of assistance.

PART 1: About Our Stiff Person Syndrome Public Support Group Raising SPS Public Awareness – Our SPS Support Group Goals Are: To Raise Public Stiff Person Syndrome Awareness about the daily challenges living with this rare disease. To be a safe, positive and respectful group with members who are all supportive, compassionate and caring to each other in our fight against SPS and its challenges. To share our personal journeys, knowledge and encourage our members to do the same. To Advocate for each other and help others Advocate for themselves. To provide educational and medical resources to educate our members and learn more about SPS. This is a wonderful group of people who understand the daily obstacles we all face living with SPS. Negative and/or inappropriate behavior WILL NOT BE TOLERATED for the protection of our members and to promote a positive family-like environment. ALL POSTS are visible to all Facebook users. ONLY POST what you feel comfortable sharing publicly.

Alma Villarreal

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@dharlow

@DanHinmon Let’s connect to discuss whether there are particular issues that this group might like to discuss where I could bring some useful perspective to the table. This is also an open call to the group — what are your nonprofit management pain points? I’ve been on boards, chaired boards, and represented nonprofits over the course of my career.

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Board development and engagement, Grants, Fundraising

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