2013 Chromosome 18 Conference

Every year, the Chromosome 18 Registry & Research Society holds a Chromosome 18 Conference.

This past year’s conference was in San Antonio Texas; the home of the Ch18 R&RS. (Every 4th year is held in San Antonio, Texas!) The next Chromosome 18 Conference is in July 2013 in Savannah, GA.

The conferences are held once a year in different parts of the country where the whole family can go, learn, play, and meet the other families of the Ch18 R&RS. The families that have had contact with each other through the list serves and even through a few awesome Facebook Groups!

Amazing families I have gotten to know, love, care about, and understand everything that goes along with being not only a special needs parent, but a Chromosome 18 parent.
The doctors appointments, seeing multiple specialists and therapists, IEP’s, hospitalizations, the looks and stares, the misunderstandings of other people, the impatience, grief, tears are all heart breaking…and each one of them understand this! It’s not just the negatives I have witnessed, because honestly, there are probably more positives; the true joy and happiness we all can and do bring each other. The knowing of true supportive people, a sense of humor, and unsuspecting strength we each have and sometimes need reminders of – even if there are tears and giggles at the same time! When one of our children FINALLY gets it…Together, we rejoice, cheer, shed tears of excitement and are applauding each other.

My family needs to experience that in more ways than through a computer screen.

My family needs to meet these families and their children; whether they have Ch18 or not!

My family needs to know there are other siblings that have and go through the same things she’s gone and will continue to go through.

My family needs Ryan to interact with the other children and for other children to interact with him.

My family needs the connection and validation with the other Ch18 families.

My family needs that place where we know we belong and are accepted 100%.
That place where everyone around us knows our struggles and sees our hurt and successes all the same with no explanation needed. A place where I can say Ryan is 4 years old and I don’t get the concerning looks of judgement. I don’t read the thoughts of others as, “If he’s 4, why isn’t he talking or running or playing like the other kids?” Because the other Chromosome 18 parents get it!

My family needs to go to the Chromosome 18 Conference.
I feel like we still have so much to learn about this ridiculously amazing chromosome abnormality. I feel a conference will teach us so much of what we don’t know. We’ve had Ryan’s diagnosis for almost 2 years and our genetics team still hasn’t given us much information. Any information I have learned, has been read through google searches and the Chromosome 18 website or what I’ve experienced with Ryan.
Knowing more will benefit my children and I.

One small, teensie, itty-bitty problem.
I’m a single mom of 2 children and can’t afford a trip for any of this.

That’s when I put my resources together and came up with a plan. Fundraising.

Last year, we raised money for an Epilepsy Walk for Ryan – and we may still do that, but this year, we want to focus mainly on the Trip to the Chromosome 18 Conference.

Any and all funds raised will go towards our trip to Savannah, Georgia in July 2013. I’ve figured out costs for flying vs. driving – and although flying would make more sense to make the over 1,000 mile trip there and another over 1,000 mile trip back – it will be much cheaper to drive! However, we will still have costs. The hotel where the conference is held is not cheap, and will cost approximately $600. The trip in gas there and back will be roughly $400. At this time, I’m unsure if there are costs for anything else or the conference itself in Savannah.

I do know if this is going this happen, I have my faith in God and my loving supporters out there ready to help! YOU!

I don’t want to put a goal on the amount we want to raise, but I do know any funds that we raise from now until July that we do not need for our trip, will go back to the Chromosome 18 Registry and Research Society.

Please stay tuned for more information on how you can help us and donate!
If you’d like to be notified when my page is updated, please find the FOLLOW link and sign up for emails directly to your email.

Update:
Please follow the links below for the fundraisers the kids and I will be doing to raise money for the 2013 Conference:

Advertisements

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

%d bloggers like this: