Mar 29, 2018

Thank you for helping kids like Myles!

Myles
Myles

Challenge

Dup15q syndrome is a rare genetic disorder caused by a duplication of chromosome 15q11-13. Individuals with this disorder often have autism, seizures and global developmental delays. Parents have a difficult time finding information on dup15q due to it's rarity. Dup15q Alliance provides education and support for those affected by dup15q and encourages research and targeted treatments.
Solution

Often, our parents run individual fundraisers that not only support Dup15q Alliance but help our parents earn conference fees towards the Dup15q Alliance family conferences which provide parents and caregivers with the opportunity to learn about the latest treatments and therapies for those with dup15q syndrome. We create a unique sense of community and understanding. Many of our families tell us that this is one of the few places they feel like they don't have to explain their children. There is a great sense of acceptance and camaraderie.
Long-Term Impact

Dup15q Syndrome has so many unanswered questions. The support of pre-clinical models of the disorder (mice and fly models), are the best way to find the answers we so desperately need. The care of the a patient with a rare disorder like Dup15q Syndrome is challenging and a multidisciplinary approach is necessary for improved outcomes. Dup15q Alliance supports 8 multidisciplinary clinics to provide the best clinical care and also collect as much information about dup15q syndrome as possible.
Resources http://www.dup15q.org
Dup15q Alliance's Website

Links:

Dec 27, 2017

Send a family to conference for rare disorder

Thank you for supporting Dup15q Alliance!

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

Dec 22, 2017

Miles for Myles

Myles
Myles

 

$5,000
total goal
$3,667
remaining
1
donor
0
monthly donors
3
months
Challenge

Dup15q syndrome is a rare genetic disorder caused by a duplication of chromosome 15q11-13. Individuals with this disorder often have autism, seizures and global developmental delays. Parents have a difficult time finding information on dup15q due to it's rarity. Dup15q Alliance provides education and support for those affected by dup15q and encourages research and targeted treatments.

Solution

Often, our parents run individual fundraisers that not only support Dup15q Alliance but help our parents earn conference fees towards the Dup15q Alliance family conferences which provide parents and caregivers with the opportunity to learn about the latest treatments and therapies for those with dup15q syndrome. We create a unique sense of community and understanding. Many of our families tell us that this is one of the few places they feel like they don't have to explain their children. There is a great sense of acceptance and camaraderie.

Long-Term Impact

Dup15q Syndrome has so many unanswered questions. The support of pre-clinical models of the disorder (mice and fly models), are the best way to find the answers we so desperately need. The care of the a patient with a rare disorder like Dup15q Syndrome is challenging and a multidisciplinary approach is necessary for improved outcomes. Dup15q Alliance supports 8 multidisciplinary clinics to provide the best clinical care and also collect as much information about dup15q syndrome as possible.

Resources http://www.dup15q.org
Dup15q Alliance's Website
 
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