How the Network Can Help Your Family

The Chromosome 9p-minus Network is extremely valuable to all families affected by 9p Deletion Syndrome–newly diagnosed or long-standing diagnoses. Since so little information is available to families through medical sources, often the most helpful information comes from our fellow members. The Network enables families affected by 9p Deletion Syndrome to establish contact with others, exchange information relating to their 9pminus individual, and to gain support from their fellow members.

Below are some of the various ways members exchange information within our Network. Access to all methods of information are free and available upon completion of enrollment. Participation is voluntary but highly encouraged for each activity.

Yahoo eGroup: The 9pminus Yahoo eGroup is a by-invite, private site that enables families from around the world to exchange information, support, and knowledge relating to their 9pminus loved one. There is also the opportunity to upload photos and to view photos of other 9pminus individuals. The group is moderated by volunteers to control posts and spam.

Yearbooks: The yearbooks are perhaps the most treasured source of information, support, and encouragement available through the Network. Once a year in February, yearbook guideline letters are mailed to enrolled families to instruct them on submitting a yearbook letter. Deadline for entries is April 15th. During early summer, each member of the Network is mailed a colorful, bound yearbook full of submissions and photos by fellow Chromosome 9pminus Network families. Yearbooks are supported by the annual Mother’s Day Tea Fundraiser and made possible by the members of the Activities Committee.

Family Reunions: Every three years, there is a weekend gathering of 9pminus families held in the United States. It is a wonderful opportunity to meet other 9pminus families and to share your experiences. In the past there have been roundtable discussions, presentations from genetic scientist Dr. Stuart Schwartz PhD, and entertainment for the entire family. The next family reunion is slated for 2014, location TBD. Family Reunions are supported by the annual Duck Race Fundraisers and made possible by the members of the Family Reunion Committee and Host Family.

Facebook: The “Chromosome 9pminus Network” group can be found on Facebook. Members from around the world share their 9pminus loved one with others on this open (not private) group. Membership is approved but not limited to enrolled families. It is a wonderful way to share the Network with extended family and therapists. Administrators of the group are volunteer Network families.

Newsletters: In the Summer and Winter of each year, the Network publishes and mails newsletters to all members. Each newsletter is filled with information from the Board of Directors, results from fundraisers, updates on enrollment, and a coloring section for 9pminus individuals. Newsletters are supported by the annual Mother’s Day Tea Fundraisers and made possible by the Board of Directors and Network family volunteers.

Dr. Alfi Love Awards: In January of each year, an announcement is made to Network families regarding the Dr. Alfi Love Awards. On Valentine’s Day (February 14th), an announcement is made proclaiming the winning 9pminus individuals in their age category along with an overall winner. The purpose of this award is Dr. Alfi’s vision to reward 9pminus individuals who share love and provide service. The Dr. Alfi Love Award is made possible by the generosity of Dr. Omar Alfi and members of the Dr. Alfi Love Award Committee.

Birthday Cards: Each year, enrolled 9pminus individuals receive a birthday card from their 9pminus Network friends. The birthday card program is supported by the annual Mother’s Day Tea Fundraiser and made possible by a volunteer 9pminus parent.

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