1p36 Deletion Support & Awareness
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I have a duaghter who was diagnosed when she was 9 months old and she is now 5. My dauhgter is a Fighter like many of the families who are being helped by 1p36 Deletion Support & Awareness.
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The Great!
I've personally experienced the results of this organization in...
My family and I have been to the 1st ever conference and the 3rd conference last year. Meeting the many families with special needs kids has given me hope to know there are others families going through what I have with my daughter. Knowing we all relate
Ways to make it better...
If I had to make changes to this organization, I would...
like to see more news stories around the world and funding to help support the many families dealing with 1p36 Chromosome Deletion. The more people know that it exists the more help we can get.
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What I've enjoyed the most about my experience with this nonprofit is...
knowing we are related through our kids. I can count on any of the "1p36 Family" to get me through my difficult times.
The kinds of staff and volunteers that I met were...
my extended family are all great. They all know whart I am going through
If this organization had 10 million bucks, it could...
there would be so much the 1p36 Deletion Support & Awareness could do.
Ways to make it better...
funding and information is more available
In my opinion, the biggest challenges facing this organization are...
fundraising
How frequently have you been involved with the organization?
About every week
When was your last experience with this nonprofit?
2010
Patients affected by 1p36 Deletions and their families are rare enough that personal interaction and support is limited. To remedy this, I've been able to work with support group members to host annual conferences for families. At these conferences patients and families can interact, support each other, learn from doctors and therapists. The conferences have become an essential part of many group member's summer plans.
The Great!
I've personally experienced the results of this organization in...
as I've seen my own family able to make contact with other families like mine and receive the support they need.
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How frequently have you been involved with the organization?
About every week
When was your last experience with this nonprofit?
2010
I am so very proud to be a member of such a loving group. With the help of other members in this close knit community I have learned to provide the best care possible for my daughter, whom is bestowed with a 1p36 deletion. I have learned invaluable "tricks of the trade" in helping my disabled daughter live to her fullest potential. 1p36 Deletion Support & Awareness has provided me with information in the latest technologies; in physical, occupational, speech, & behavioral therapies, communication devices, nutritional needs, information about varies medical procedures ranging from surgeries dealing with tubes in ears to spinal fusion, reviews on medical equipment, & genetic testing. If there was ever a handbook to be printed on how to care for a child/loved one with a disability, 1p36 Deletion Support & Awareness would be able to provide brilliant input.
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The Great!
I've personally experienced the results of this organization in...
Their 2009 conference provided me such a sense of relief and hope. Their 2010 conference has me looking forward to seeing my "extended" family and learning from the highly qualified specialists that are associated with the group.
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What I've enjoyed the most about my experience with this nonprofit is...
The sense of camaraderie
The kinds of staff and volunteers that I met were...
Extraordinary
If this organization had 10 million bucks, it could...
Change the face of the medical community
How frequently have you been involved with the organization?
About every week
When was your last experience with this nonprofit?
2010
1p36 DSA is a GREAT Nonprofit!!! The annual conference and support received from 1p36 DSA is invaluable to the families it serves.
The Great!
I've personally experienced the results of this organization in...
1P36 DSA is impacting the 1p36 community by providing online support and annual conferences as well as educating the public and medical field.
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How frequently have you been involved with the organization?
About every month
When was your last experience with this nonprofit?
2009
1p36 Deletion Syndrome is a chromosome disorder that is characterized by moderate to severe intellectual disability, delayed growth, limited speech ability and distinct facial features. It is estimated that 1p36 Deletion Syndrome occurs in one in every 5,000 to 10,000 births though many individuals still go undiagnosed. 1p36 Deletion Syndrome is the most common chromosome deletion. Many parents when given their child's diagnosis do not receive more than the location of the deletion and a lesson on chromosomes & genetics. Parents feel alone and overwhelmed. In 2009, I created the 1p36 Deletion Support & Awareness website so parents, caregivers and the medical community could seek information about 1p36 Deletion Syndrome. What I did not know was the personal reward I would receive from answering the website emails. It is an amazing experience to be able to communicate with others who are going through the same experiences and introduce them to a welcoming group of people who support each other through the accomplishments and the difficult times.
Photos
The Great!
I've personally experienced the results of this organization in...
attending the 1p36 DSA Conference. My family and I were lucky enough to attend Boston 2008 and Indianapolis, IN 2009. This year we will be attending the Salt Lake City 2010 conference.
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How frequently have you been involved with the organization?
About every week
When was your last experience with this nonprofit?
2009