Quote:
Originally Posted by
Dan Druff
Hate to say this, but I agree with this post.
I brought a different form of this up on the emergency show that was run here last night.
My two concerns about 22Q:
1) If this is a small charity, how could they have not been excited about this high-profile fundraiser and been salivating at the prospect of $6500 being raised? One could argue that they simply were happy to have someone raising funds on their behalf, and were thrilled to get $2021, so they didn't bother to check on the reported final total. However, there's another way of looking at it. JoeU's wife was on the board. How could they NOT have found out they were getting $6500? And if they knew they were getting $6500, why weren't they disappointed when only $2021 came in? Why didn't they ask anyone any questions? I don't believe that anyone was working with Jasep (in fact, I find this HIGHLY unlikely), but I am concerned that perhaps the charity is not run competently, and we really need answers to these questions if the community is going to make any effort to "re-donate" the lost money.
2) Why did it take so long to audit the bank accounts to prove that Jasep never submitted the money? JoeU said last night that they switched treasurers and bank accounts sometime over the past 5 months. Okay, fine. But how difficult is it to get statements from two different bank accounts, even when one is closed? I have obtained statements very quickly in the past (usually when doing my taxes), and that includes closed accounts. It just seemed like this took too long.
Once again, I don't think the 22Q Foundation is shady, and I definitely don't believe anyone there is working with Jasep.
However, if a small charity like this did not notice such a large theft, and took several days to verify that the funds were never received, that does bring up some questions as to how everything is being handled there. This is separate from the Jasep issue, but something we really should find out if people here are going to donate further money.
I'd like to try and answer some of these questions about the foundation.They are valid questions. Hopefully, I can relay the answers you are looking for.
As I said on radio before, the September-November time frame held a great deal of change for the foundation. In that time period, the president, and treasurer both stepped down, as well as another board member. That board member did help with setting up the deposit system for the podcast. That was the extent of the board's involvement with the podcast. As I have said before, I am NOT on the board, however my wife is. She was only aware of the total raised because of what she heard on the show. This was not reported to the treasurer. The foundation was excited about the podcast because it would accomplish 2 things: 1. raise awareness (this is one of the biggest goals of the foundation), and 2: raise funds the foundation needed. All foundations need money to run. They probably did not pay attention to the amount submitted because they were happy to get anything, and the podcast accomplished the bigger and more challenging goal of raising awareness.
Up until last week, we had no reason to question Jasep about this money.
The funds lost were not noticed because the foundation did get $2100 from the podcast. The executive board that was aware of that number stepped down in October. The November board meeting was postponed, and the board reconvened only this January by phone. The annual meeting is held in April, and that is usually where financials are gone over in detail. If the BAP fiasco didn't happen, we probably would not have learned about this until then.
About the foundation: The International 22q Foundation is a grassroots organization started in 2003 when a group of parents banded together to raise awareness of the syndrome there children were affected by. The syndrome itself was only discovered about 15-20 years ago with the discovery of the FISH screen
http://en.wikipedia.org/wiki/Fluores..._hybridization that accurately displayed the deletion of the 22q11.2 portion of the 22nd chromosome. Even when my own daughter was diagnosed at UCONN in 2008, it was still a mystery. She has a micro deletion, which presents itself differently from the standard deletion. All in all, there are over 180 symptoms associated with the syndrome, and rarely do 2 kids display the same issues. The guide for doctors to treat and care for children with this disorder was only initially written in 2011 (Practical Guidelines for Managing Patients with 22q11.2 Deletion Syndrome, available at the Journal of Pediatric Medicine).
So fast forward, the board is filled with mainly parents (6 of 11 board members). Two people that stepped off the board were also parents. These are all volunteer positions. The parents are tasked with caring for their children with the deletion, holding full time jobs, and their standard daily lives. They donate whatever time they have left to the foundation. The board members reside in New Jersey, Connecticut, Pennsylvania, Florida, and Toronto, Canada. It is a challenge to get the group together for a board meeting, so they only meet 4 times a year in person. Conference calls and e-mails are exchanged when necessary. Keep in mind that all of these board members are volunteers, and donate their time to the cause.
In July, this small group of parents and clinicians put on The 8th Biennial 22q11.2 Deletion Syndrome Meeting (
http://22qconference.com/ ). This was done in Disney. I have some familiarity with the financials for this conference because my wife and I raised nearly $20,000 to help cover the cost of this meeting. The meeting was extremely expensive and cost the foundation nearly $400,000 (I'm not sure of the final figure). A conference of this magnitude, with visitors from around the world (yes, I met doctors from Italy, Sweden, England, as well as parents from Australia) can be a daunting task. So the folks from the foundation (my wife and I included) still feel like we're in recovery mode. I personally was in Orlando for 11 days for this conference, and probably spent only 1-2 days relaxing. The rest was spent working on the conference.
Fast forward to October. When the previous treasurer stepped down, a new treasurer was elected to take her spot. The transition was not smooth coming off the heels of the conference. Also, it is my understanding that the foundation switched banks during this time to make it more convenient for the new treasurer to do things in her spare time. Combine that with the fact that we actually did receive money from the podcast, and the additional funds were missed.
Why did it take so long to get the facts: well, there's a couple of reasons for that:
1. When you are going to accuse someone of stealing, especially in this context, you better have your facts straight. I can't accuse Jasep of stealing (or not sending) this money unless I turn over every rock. That takes some time because....
2. I had to check with 2 treasurers for the numbers. I went to both the old treasurer who still had some spread sheets as well as the new treasurer for the facts. This also prompted the new treasurer to audit the books to be certain. I also asked her to go through everything through December to be certain. I remind everyone again, they are both volunteers, and did this for me in their spare time.
3. Once they relayed this information to me, I had them check again to be sure. See #1 for further explanation.
This investigation in the books took just over a week. I didn't text Jasep that I was coming to sweat him until last Tuesday. I didn't talk to the former treasurer until last Wednesday. I received my final facts Sunday, and was waiting for direction from the board on how to address this. I was also waiting to construct an official response or press release with the board's approval. When you deal with a board, you can't act alone. Having said that, this whole thread is in my words.
I hope I have addressed everyone's questions pertaining to the foundation. Please feel free to DM me any other questions. I'm happy to answer them.
Joe
