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Conference


Sue
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I was just told that there is going to be another conference/lecture in July with Dr. Grubb and two other dyst. doctors speaking I am wondering if anyone here would be going????

I have never been but I am seriously considering, so if anyone else has gone to something like this could you tell me what it is like, how long, etc.

Thanks

Sue

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A copy of the email sent to me from Debbie at Dynakids

July 13 / 4:30 PM - 10:00 PM

?Goofy Slipper Lecture?

Ward Pavilion

WILDWOOD PRESERVE

5100 W. CENTRAL AVENUE

TOLEDO, OHIO (419-535-3050)

The parents generally love talking to adults with these conditions as well. Please don't feel ackward because we tend to have so many teenagers in DYNA...Just fit right in and enjoy yourself if you do come. We are asking that any adults leave seats up front for our DYNA kids though.

Debbie

I'm not sure where this is but I am definately going to look into this I will let you know. If I am up to it I am definately going.

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Hi All,

This is Debbie from dynakids.org. I just wanted to let you know that if you do plan to attend we need to know to expect you so we have enough seats set up. You should notify us by email: ddominelli@dynakids.org by June 25. We have limited space available so of course it is nice to know how many from outside our group plan to attend.

We serve pizza to our DYNA kids and families mid lecture. We can feed some of you but we sure can't feed an army. Please let us know if you plan to eat with us. We may have to request a small food fee if so.

Basically, what we hold each year is not a conference but is what we call our "Summer Chill" and it is a 3 day private summer social event for DYNA kids. What is public is our "Goofy Slipper Lecture on Dysautonomia" on July 13 at 4:30 PM. This years speakers are: Blair P. Grubb, MD, Hasan Abdullah, MD, and Robert Hoeldtke, MD.

Michelle and I work closely together and this invitation is only open to members of her organization. If you are unable to attend we video tape the entire lecture each year.

Email me if you have any questions. I am sure Michelle and I will be talking frequently as well.

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No...but we graciously accept donations to help cover our rental facility costs etc. and if you do want to eat the Pizza at the lecture - we will ask for a few bucks to cover that.

Michelle and I greatly depend on donations to keep doing this work and every little bit helps us. It takes a tremendous amount of behind the scene work to accomplish things and it is very stressful for us sometimes to not know what funds we have coming in. We both run all volunteer organizations but we can only accomplish big things if we know we have funds coming in and how far we can get with promotoing awareness and support depends on what funds we do have. We run our organizations from donation to donation just like most of us live from pay check to pay check. If Michelle is like me, she hates to ask for donations but needs them badly. Even $5.00 helps.

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Debbie, you are very right. DINET is run from donation to donation. There are so many ways in which we can make a difference in educating patients and physicians. However, it all costs money. I'd love to say that I am independently wealthy and that I alone can pay to make DINET's CD's and publish informational material, but that just isn't so. I rely on each and every DINET member to make educating both physicians and patients possible, and I rely on DINET members to cover DINET's operating costs. I do hate to ask for donations, but they are needed badly. We do what we can with the little funds we receive, but it's a far cry from what we could do if everyone on this forum banned together in the fight against dysautonomia. If you want to educate people against dysautonomia, you can't go wrong by supporting active orgainizations like DINET or DYNA that are set up to make things better for us all. Just think of what we could do if we all banned together...

Michelle

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:P I am going to the conference to hear the doctors speak. I live in South West Ohio close to Dayton. If anyone wants to split a room please email me at VJWeaver32@earthlink.net.

I did want to let all of you know that I did attend the conference last year to help Debbie. It is a really great conference and is kinda sad in a way to see these young people having to suffer with our disorders. These kids are troopers. They are really great and go though a lot like we do but the parents of them go through it to. Fighting with the school systems.

Last year Dr.Grubb spoke and did a great presentation on our disorders. It would be worth it to get the Video from last year.

Hope all is doing well.

Vickie

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My husband and I made our reservations this afternoon, if anyone else plans to attend it would be great to set up someplace where we could all meet. :P

Sue

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Thanks Julie! This is Debbie's conference for the kids with dysautonomia, so you might want to ask her if she needs help. Last I checked, I think she had everything covered though. That's really sweet of you to offer. :)

Michelle

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