Send family to conference for rare disorder!

by Dup15q Alliance
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Send family to conference for rare disorder!
Send family to conference for rare disorder!
Send family to conference for rare disorder!

Project Report | Apr 7, 2017
Our conference was a great success!

By Vanessa Vogel-Farley | Executive Director

Enjoying the conference
Enjoying the conference

Hi GlobalGiving donors! One dup15q mom tells it best:

I still remember receiving the e-mail from my husband whith three words, "Check this out," along with a link to the conference. Could I possibly be reading it correctly? Three whole days dedicated to this condition, which my son had been diagnosed just one month prior? A month that shook us to our core, not only because we knew our life would neither be the same nor what we had thought it would be, but also beacuase of the helplessness that even in the "Google-It" era it seemed there were few answers to be found.

Day One: It suddenly became so real, so fast. I looked up and saw a little boy who looks so much like mine. An arrow shot straight to my heart. 

Day Two: As soon as I got to our room that night - head spinning - I could digest the day with one thought only: we had to enjoy every minute of our life because there would be no other way to this through this.

Day Three: I felt a deep sense of gratitude to the families of older children that had pioneered these efforts and to the Dup15q Alliance leaders who selflessly offered their time. The energy was powerful and uplifting.

We are now in the planning stages for our 2017 International Family Conference in Redondo Beach, California and your support is vital! Dup15q syndrome is a rare disorder and it is often difficult for families to find fellowship and resources. The conference provides a chance for families to connect with others who are on dealing with similar issues every day and learn about cutting-edge research and treatments. On May 7th, GlobalGiving will match 30% of donations made. Please support our project and pass this message onto your friends and family. Learn more about chromosome 15q11.2-13.1 duplication syndrome at www.dup15q.org. 

Thank you!

The Dup15q Alliance Community

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Organization Information

Dup15q Alliance

Location: Highland Park, IL - USA
Website:
Facebook: Facebook Page
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Project Leader:
Dup15q Alliance
Fayetteville , NY United States
$6,546 raised of $7,500 goal
 
91 donations
$954 to go
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