Project Report
| Mar 12, 2019
Project Report
By Marlene Schwan | Administrator
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:
![Share on Twitter]()
![Share on Facebook]()
Dec 12, 2018
Thank you for sending a family to Conference for
By Naka King | 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:
![Share on Twitter]()
![Share on Facebook]()
Sep 17, 2018
Thank you for sending a family to conference for rare disorder!
By Ava Markoutsas | Administrator
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
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
![Share on Twitter]()
![Share on Facebook]()
