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 | Sep 27, 2017
Thank you for supporting send family to conference

By Elyse Linderman | Administrator

One Dup15q Alliance Family

One Dup15q Alliance Family

Hi GlobalGiving donors! One dup15q mom tells it best:

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.

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. Learn more about chromosome 15q11.2-13.1 duplication syndrome at www.dup15q.org. 

Thank you!

Links:
 
 
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.

Our 2017 International Family Conference in Redondo Beach, California was a great success and your support was 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. 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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Jun 30, 2017
Thank you for supporting Dup15q Alliance!

By Elyse Linderman | Administrator

Apr 7, 2017
Our conference was a great success!

By Vanessa Vogel-Farley | Executive Director

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Organization Information

Dup15q Alliance

Location: Highland Park, IL - USA
Website:
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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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