22q & Mutually Benifical Partnerships
You are here
I have recently felt somewhat overwhelmed by the sheer capacity of this massive 'to-do' list that stares at me from inside my brain. The same 'to-do' list that lies before all nonprofits that desire to fully achieve their stated missions. It is an enormous weight, which must be evaluated every day, and re-evaluated time and time again. Nothing is quick, nothing comes easily and no matter the cause... There is always more work than there are people. Today, as I type this I am pleased to proclaim that we have successfully achieved our first 22q medical webinar, Episode 5 of The 22Q University. We achieved this with the 22q Center at Nationwide Children's Hospital and it was a smashing success! My heart is for the moment full and confident that we are headed in the right direction and we are indeed achieving our mission one step at a time.
We believe The 22Q University is a logical, inclusive and fiscally responsible way to ensure that families affected by 22q have access to professionals who actually have hands on experience treating patients diagnosed with 22q. We offer these at no charge in a sincere effort to unite 22q experts with the 22q community without either having to pack a bag or buy a plane ticket. The ultimate "Mutually Benificial Partnership between our organization, the 22q professionals, and the 22q families.
But you know what keeps me up at night? How do we make sure theses webinars are always full? Not because it's imperative for everyone to watch it live. I mean that's why we tape them afterall. But, because the live Q&A sessions are incredible and the webinars just get better every time someone asks a question! AND then that answer is recorded for all to hear! See, It has always bothered me when I've attended 22q conferences and been standing in the hall during a break and heard a parent ask a question to one of the presenting doctors, clinicians, or educators.. Soooo many times I've thought "OMG I wish *insert a 22q parents name here* had been here. She/he was just dealing with this exact issue and had the same question! Man, I wish she'd just heard this!" That's how the 22Q University came to be. Because I don't have a child with 22q Deletion Syndrome, but you may and I want you to have access to those light bulb moments of clarity that come with speaking to someone who actually knows what you are talking about. I've watched it happen it hotel lobbies from London, to Cincinnati, OH and every where in between.
So, I hope you are tuning in, and I hope you'll help us make sure every 22q parent or caregiver knows when these webinars are happening live. And I hope that if you havn't already you'll check out Episode #1"22q IEP's", Episode #2 "22q School Success" Episode #5 VPD and Hyper-nasal Speech when you have a chance.
If you know of a professional with experience treating 22q, do us a favor! Send them an email and ask them to present a webinar with us. We are open to subject matter and topics of all kinds as long as the relate to 22q deletion syndrome.
Here's to succeeding and by doing so achieving our shared goal to ultimately improve the lives of the 22q family... as a family. Because after all that's what we are.
My best,
Executive Director
The Dempster Family Foundation
P.S. We thought you all might like to read some of the feedback (see below)
"This was probably what I needed for my son most right now...I feel better about where things stand and what I was told at another 22Q clinic. They were also very willing to share the speech therapy step which was a huge help! At least now I feel like we are on the right path and doing the right things. Gave me some ideas for a new IEP that will be coming very soon. Thank you The Dempster Family Foundation for setting this up!"
Kristy Marie"I thought the webinar was great! It was very informative and came at the perfect time for my family as my son is having his flap surgery next month. Do you know when this video will be available online?PS - will definitely want to access this again once it's on the website library. I'd like to show it to some family members."
On Facebook-"Just wrapped up listening to a fantastic webinar provided by the Dempster Family Foundation and Nationwide Childrens Hospital on the topic of VeloPharyngeal Dysfunction. We didn't know until our 22q kiddo was 17 that her hyper-nasal speech and difficult to understand communication was due to a common problem with 22Q kids. Make sure to use this great resource provided by the Dempster Family Foundation! Having access to specialists in the medical field that KNOW 22Q is invaluable. Thanks Michelle Breedlove Sells!"
Via Email- "Thanks for a great webinar tonight. Dr. Kirschner and Dr. Baylis were very informative. My daughter (22Q) and I just met them both this spring. Both very caring people and informative doctors. Dr. Kirschner will be performing this surgery for my daughter this August. They did go over all of this info w us in person, bit it's quite difficult to retain all this at the time you're trying to just soak it all in. Tonight's presentation was not only a great review but helpful in giving peace of mind."
Margaret Grell
"Excellent webinar Very informative and clearly presented"
From Nationwide Children's, 22q Center "Michelle, we are still on cloud 9 on how well the webinar worked last evening. It was a success on all fronts. Thank you for including us in your series. We are planning to offer another webinar in the Fall focusing on behavioral issues. Are you interested in us doing this as part of your series? We wanted to make the offer to you before we proceed on our own.
Michelle Breedlove Sells "Thank YOU for participating. I think the best part is always the live Q&A. Hearing the parent questions and then hearing the presenters answer in real time is always the most informative for me. Helps me understand complicated issues, AND helps me understand the common individual points that seem to be a reoccurring theme from one 22q family to the next. Helps me do my job better. I hope it's half as beneficial to the community. Love the feedback. Thank you for sharing it."