March 2022
The March 2022 Monthly Update: Rebuilding the GRSBA
It's been five weeks since our elections and your board has been diligently rebuilding the GRSBA at many levels. Each month, I'd like to keep all members informed of what's new and where we're going. Soon, this update will be a part of our ongoing newsletter.
The short summary
Since this update may have a lot of detail, let me first give you the Reader’s Digest version.
  1. Our organization is going through unprecedented challenges right now after losing our non-profit status with the government and consequently losing our insurance policies and status with critical partners like the United Way. Until we can get our non-profit status reinstated, we can't act like a normal charity. It may take as little as two months to six-months or more to restore that non-profit designation.
  2. We're now focused on listening to our membership so that we can form committees to meet those needs directly.
  3. On Thursday, June 2 from 6:00-8:00, we have scheduled an all-member meeting (location TBD) for open dialogue and discuss the feedback we're received and gather your additional perspective. We hope to have our non-profit designation restored by then.
More detail on where we are now
Due to many factors which understandably includes the COVID-19 pandemic, we haven’t filed the required IRS Form 990 for over three straight years. After three years of non-compliance, the IRS automatically revokes the 501(c)(3) non-profit designation from an organization. That means today, the GRSBA is no longer a charity and has to pay taxes like any business.

Since we’re no longer a charity, the United Way has told me that we are no longer considered one of their partner organizations. Unless we are reinstated as a non-profit organization by the IRS by the end of April, we’ll need to start all-over with the United Way registering as a brand new charity. At that time, any donations the United Way is holding for us will be put in their general fund and distributed to other charities. We also no longer have insurance policies covering our organization in situations such as if someone gets injured at one of our events.
What we’re doing:
Our leadership is adhering to the board responsibilities typical for a non-profit organization as outlined here.
  • Our Secretary, Gregg Chalmers, has been working diligently with the IRS and has filed the required paperwork to be reinstated (IRS Form 1023-EZ) and also working an having it expedited since typically the reinstatement process takes months. Since we have to attest to the financial integrity of the organization, we've been reviewing past transactions through a high-level audit. 
  • Our VP, Stephanie Woodward, has been negotiating with an insurance broker who specializes with non-profit agencies to get us protection as the best possible rates. 
  • Our Treasurer, Kristin Fein, has been recreating our financial documents and securing software to track our financials and be transparent with our financial status.
  • I’ve been working with the United Way and trying to escalate to ensure we don’t lose those donations which people have generously designated for the GRSBA. 
The timeline:
The IRS won’t give us a timeline for us being reinstated as a 501(c)(3) charity but we believe it can be as little as two months to as many as six months or more. Unfortunately, our ability to act as a normal charitable organization is dependent on being reinstated as a charity. Our insurance policies, our relationship with the United Way, our ability to fundraise, and much more is dependent on being a non-profit organization. Without insurance protecting the organization, we can’t in good-faith have events or other activities. Without being a charity, we can’t have fundraisers or even purchase items using our tax exemption.

Clearly, so much is dependent on us getting this letter from the IRS informing us of being reinstated in the upcoming weeks or months. When we do, we’ll sure to let all the membership know or you might just hear the celebratory cheers from where you are.
Next steps:
While we’re waiting for the IRS, our board is focused on understanding the needs of our membership. We realize that what may be needed in the future most might not necessarily be what we’ve done in the past.

Based on feedback from our members, we understand that in addition to our focus on families and young people, there is a need for service and support of adults with SB in our community. We’ve discussed education and advocacy. We’ve discussed new ideas for social media and revamping our website. But most of all, we want to hear from you. We've formed a short-term committee called the "Needs Assessment Committee" being led by Allie Ferington to reach out to our members and get their perspectives. 

We plan to have far more meetings for the members and have scheduled a membership meeting for an open discussion on ideas for the future for Thursday, June 2 from 6:00 – 8:00 p.m. with food included. We’re tentatively planning on holding it at Artisan Church on Clinton Avenue as they have offered their venue to Stephanie Woodward at no cost to our organization.
When we hear from our board and membership clearly on where we should focus, we will then create the appropriate committees leveraging the talent and time of our members to meet those needs.
I’m honored to partner with each of you to advance the cause of spina bifida in the Greater Rochester area. Although we’re in an extremely challenging time for the GRSBA, I couldn’t be more optimistic for our future. Together, I know we can make a difference.
Serving alongside you,
- Chris Muller
  GRSBA President
  Mobile: (585) 748-5697
Greater Rochester Spina Bifida Association | www.