About Hope for Trisomy
for Trisomy 13 and 18 is a not-for-profit charitable organization based in
Florida created in honor and memory of all surviving and Angel
children with Trisomy 13 and 18 and Related Conditions/Rare Trisomies. The
organization is now doing business as simply HOPE FOR TRISOMY to better
represent its broader scope. The organization's Board of Directors is made up
of families who have living and angel children with these Conditions. We are a
tax-exempt, 501(c)(3) charity.
The mission of Hope For Trisomy is to
1) FUND RESEARCH for rare trisomies and related chromosome disorders;
2) PROMOTE EDUCATION by developing programs that educate parents of children
with Trisomy about 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,
workshops, seminars, 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.
We know that with treatment, some of these precious children do survive, and
those who lose their battle with Trisomy still bring great joy to their
families, even if they live only for a moment on earth or solely in their
for Trisomy is focusing its efforts on three major objectives:
RESEARCH - Hope for Trisomy will generate funding for research for Trisomy 13,
Trisomy 18, and other rare trisomies and related chromosome disorders, and will
implement a process to encourage research organizations to apply for grants to
conduct research of conditions.
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/).
SUPPORT and SERVICES - Hope for Trisomy plans to develop several outreach and
support related services geared toward helping families whose baby has received
a Trisomy diagnosis. Such programs will include education opportunities for
parents and medical professionals, advocacy assistance, web-resource
development, and financial support.
PRINTED MATERIALS and EVENTS - Because of current and future research, Hope for
Trisomy intends to create materials, literature and workshops, seminars, and
conferences to educate the medical health professionals, and parents, so they
have accurate and current information about these conditions, along with
resources available for families. This work will also involve coordinating Hope
for Trisomy work with already existing Trisomy organizations, foundations, and
support groups so that constant and accurate information is made available.
for Trisomy financially supports SOFT - Support Organization for Trisomy 18,
13, and Related Disorders by contributing to their conference 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 about SOFT, please visit: http://www.trisomy.org.
continue to provide Gemma's Bears to families diagnosed with a rare,
life-threatening trisomy either prenatally or after birth. We also continue to
provide Payton's Birthday Bears to celebrate the magnificent milestone of a
birthday for a child who is living with a life-threatening, rare trisomy. Both
of these programs provide these bears free of charge to the requesting trisomy
family. For more information, please visit our website: http://www.hopefortrisomy.org.
Please consider donating to Hope for Trisomy, whether
to sponsor a bear, help support research, help send families to trisomy conferences,
or to develop much needed resources for families to learn how to better manage
trisomy conditions. We ultimately want to empower families to make informed