The mission of Hope for Trisomy is to:
1. FUND RESEARCH for rare trisomies and related chromosome disorders;
2. PROMOTE EDUCATION by sharing with families resources with options available to their child and teach them how to advocate for their child to receive all available treatment;
3. RAISE AWARENESS by creating and contributing to materials, literature, and conferences to educate the medical health professionals, the parents, and the public about Trisomy, so they have accurate and current information and resources available to them.
4. PROVIDE SUPPORT to families facing a trisomy diagnosis.
We know with treatment, some of these precious children do survive, and those who lose their battle with Trisomy still bring joy to their families, even if they only live for a moment on earth or solely in their mother's womb.
Hope for Trisomy is focusing its efforts on three major objectives:
1. RESEARCH- Hope for Trisomy will generate funding for research for Trisomy 13, Trisomy 18, and other rare trisomies and related chromosome disorders.
Hope for Trisomy financially supports TRIS- Tracking Rare Incidence Syndromes, which is an ongoing research project that relies on families with children with these rare conditions to participate in an online survey. The survey is used to collect and analyze data focusing on common medical conditions, developmental milestones, therapeutic needs, family-related concerns, and demographic data of families with a child (living as well as deceased) with a rare trisomy condition. For more information, please visit: http://web.coehs.siu.edu/Grants/TRIS/
2. SUPPORT and SERVICES-Hope for Trisomy provides care packages to families facing a trisomy diagnosis and also provides equipment grants to help families receive needed equipment for their child with a trisomy that may not be covered by insurance. Our website also offers many resources that could be beneficial to trisomy families.
3. EVENTS- Hope for Trisomy holds an annual walk/run to raise awareness for trisomies as well as raise funds to continue supporting research, raising awareness, and educating families.
Hope for Trisomy financially supports SOFT- Support Organization for Trisomy by contributing to their conferencec fund. SOFT provides annual conferences focused on the rare trisomy community and does a great job of providing medical clinics and involving the medical community in these efforts. For more information, please visit: http://www.trisomy.org
Please consider donating to Hope for Trisomy, whether to sponsor a care package, sponsor an equipment grant, help support research, or to help send families to trisomy conferences. We ultimately want to empower families to make informed decisions!