Helpful Links
Links are provided for information only and do not constitute endorsement by SOFT. Please help SOFT maintain current links. Contact barbsoft@rochester.rr.com to report an inactive link.
Por espanol, mire a Trisomia 18/13 debajo, en Help/Support.
Bereavement
The Compassionate Friends (TCF)
TCF is a national non-profit organization which offers grief support after the death of a child of any age. Local chapters of TCF may be available in some areas. Website: www.compassionatefriends.org
Mothers in Sympathy and Support (MISS) Foundation
MISS is an international on-line support for grieving families. Random Act of Kindness Day done in memory of my beautiful child is an annual MISS event. Website: info@missfoundation.org
Share Pregnancy and Infant Loss Support
Serves those whose lives are touched by the tragic death of a baby through early pregnancy loss, stillbirth, or in the first few months of life.
Website: http://www.nationalshare.org/index.html
Corrective repairs and other procedures
Congenital heart defect corrective surgeries-Overview
This article provides a brief explanation of specific cardiac repairs and can be seen at the University of Maryland Medical Center website at www.umm.edu. See article at page URL: http://www.umn.edu/ency/article/002948.htm
Donate Life America
Under the right circumstances persons affected with trisomy conditions can be organ and tissue donors. “Donate Life is a 501(c)3 not-for-profit alliance of national organizations and state teams across the United States committed to increasing organ, eye and tissue donation.” Quote from Website: www.donatelife.net
Feeding Aids and Nutrition
The Pacifier Activated Lullaby (PAL)
PAL is a pressure sensitive pacifier developed by a music therapist as a teaching tool to help premature infants learn to suck.
Website: www.rinr.fsu.edu/summer2005/features/babyspal.html
The Peoples Pharmacy
Official site of The People’s Pharmacy® radio program, newspaper column, books, home remedies, drug reference and herb library by Joe and Terry Graedon.
Probiotics to Ward Off Colds – The People’s Pharmacy® Linked with permission from Joe Graedon
Website: http://www.peoplespharmacy.com
SHS Nutrition
This site has been designed to help you understand more about Advanced Medical Nutrition and its related conditions. You can use this site to search through our extensive range of articles, references, clinical studies and product information on Advanced Medical Nutritional Therapies. Website: http://www.shs-nutrition.com/conditions/
Special Needs Feeder (new name for Haberman feeder)
This special nipple for bottle feeding premature infants and also infants with cleft palate is available through Medela Inc. Medela sells breast feeding supplies but also has related products such as the special needs feeder. Several SOFT families have reported success using this nipple. It can only be ordered by phone at 1-800-435-8316 or is sometimes available through medical supply companies or pharmacies.
Help/Support
GiveForward
This group empowers friends and family to send financial support to patients as they navigate a medical crisis. Since Aug of 2009, we have helped patients and their families raise over $4 million for things like co-pays on expensive medicine, travel and lodging for treatment in other cities, and experimental treatments not covered by insurance. Website: http://www.giveforward.com/
Ironman For Kids Foundation
“Ironman for Kids passionately seeks to raise awareness for Trisomy, a chromosomal disorder. Thru various sporting events and programs, we strive to educate those that have never heard of trisomy, while also being a support group for families living with the disorder.” Quote from Website: www.ironmanforkids.com
Molly Bear Foundation
This foundation was created in loving memory of Molly by her parents. “The goal of the Molly Bear Foundation is to provide supplemental financial assistance to families raising children with Trisomy 18. Unfortunately we will not be able to support every family in need, but we will do our best.” Quote from Website: www.mollybear.org Molly Bear Foundation helped families attend the 2011 SOFT conference.
National Parent to Parent Network: Mothers United for Moral Support (MUMS)
MUMS’ main purpose is to provide support to parents in the form of a networking system that matches them with other parents whose children have the same or similar condition. Phone 920-336-5333 Website: http://www.netnet.net/mums/
Noah’s Never Ending Rainbow
The mission of Noah’s Never Ending Rainbow (NNER), a 501(c)(3) non-profit organization, is to educate, advocate, raise public awareness, promote strategic alliances and assistance families who have children with Trisomy and related chromosome disorders. NNER has helped many families attend SOFT conferences. Website: www.noahsneverendingrainbow.org
Pacer Center
Pacer Center is a parent training and information center for families of children from birth through 21 years located in Minneapolis that serves families across the nation as well as Minnesota. EZ-AT-book-2011-final.pdf is a booklet which can be ordered or downloaded from this site that has practical ideas to help the disabled child (birth – three year old) but many ideas are applicable to kids of all ages. Be sure to also check out Assistive Technology at this site.
Website: www.PACER.org
Trisomia 18/13 (apoyo para la comunidad hispana) los estados unidos
This is a new social facebook site for Spanish speaking families who have a child with trisomy 18 or 13 and related disorders. Website: http://www.facebook.com/groups/trisomia18
Faces of Trisomy Awareness
Website: http://facesoftrisomy.org
https://www.facebook.com/Trisomy.SOFT#!/groups/242657113535/
Awareness and social facebook group. Beautiful video of photos of children with trisomy 18, 13 and related disorders taken at SOFT conferences used to bring awareness to the public about trisomy conditions. Group founder and professional photographer Jude Wolpert is the mother of Kammie who has trisomy 18.
Perinatal support
Alexandra’s House
Charitable perinatal hospice and infant refuge Website: www.alexandrashouse.com
Be Not Afraid
Benotafraid.net is an online outreach to parents who have received a poor or difficult prenatal diagnosis. The family stories, articles, and links within this site are presented as a resource for those who may have been asked to choose between terminating a pregnancy or continuing on despite the diagnosis. The benotafraid.net families faced the same decision and chose not to terminate. By sharing our experiences, we hope to offer encouragement to those who may be afraid to continue on. Website: www.benotafraid.net
Carolina Perinatal Support Network (CPSN)
This is a relatively new concept of care for parents who choose to continue a pregnancy after learning their expected baby has a life limiting diagnosis. CPSN is willing to assist any family who does not have available resources in their area. Website: www.carolinaperinatal.com Email: ttate@perinatalsupport.com
Hygeia
Hygeia focuses on pregnancy, neonatal loss and bereavement and it is a non Profit, 501-c-3 organization with a Board of Directors, a Medical Advisory Board and a Parents Board.
Website: http://hygeia.org
Prenatal Partners for Life
Founded by the mother of a boy who had trisomy 18, this organization provides support information & encouragement for carrying to term with an adverse prenatal diagnosis and support for raising your child with special needs after birth. Website: www.prenatalpartnersforlife.org
Photography
Firefly Nights Photography
Working with all children, photographer Megan Drane, is Chicago’s premier special needs photographer. Located in the Naperville, Illinois area, Firefly Nights Photography specializes in child portrait sessions at your home or on-location. Firefly Nights took photos at the picnic at the 2011 Annual SOFT Conference.
Website: www.fireflynightsphotography.com
Now I Lay Me Down To Sleep
The Now I Lay Me Down to Sleep Foundation (NILMDTS) administers a network of almost 6,000 volunteer photographers in the United States and twenty-five international countries. At a family’s request, a NILMDTS Affiliated Photographer will come to your hospital or hospice location and conduct a sensitive and private portrait session. The portraits are then professionally retouched and presented to the families on an archival DVD or CD that can be used to print portraits of their cherished baby. Our entire network of affiliated photographers graciously donates their time and talents to our families and we are proud to be able to offer our services at no cost. Video of Trisomy Children Website: www.nilmdts.org
Other information
Law Help
Helps low and moderate income people find free legal aid programs in their communities, and answers to questions about their legal rights. Website: http://lawhelp.org
Registered Disability Savings Plan
For Canadian families with a disabled child
Website: http://www.cra-arc.gc.ca/tx/ndvdls/tpcs/rdsp-reei/menu-eng.html
Resource Repository
Resource Repository is an electronic collection of documents, links, audio, and video files, that relies on contributions from the community in topic areas such as newborn screening, family health history, genetic testing, reimbursement, research, and drug development. Website: www.resourcerepository.org
State Protection and Advocacy Agencies
Administration on Developmental Disabilities (U.S Department of Health and Human Services)
The protection and advocacy of legal and human rights information and referral investigation of complaints of violation of rights of individuals with developmental disabilities working to resolve complaints through mediation, alternative dispute resolution and litigation
Website: http://www.acf.hhs.gov/programs/add/states/pas.html
Shop/subscribe
Exceptional Parent (EP)
This magazine is helpful for parents of a child or young adult with special needs. It provides family stories, an annual resource guide of organizations for all disorders, and discusses products, and services. Website: http://eparent.com
Hannah’s Wish
Markets Trisomy Awareness bracelets Website: www.trisomykidsarespecial.com See card below.
Heritage Makers
Storybooking is the unique Heritage Makers process of combining photographs with personalized writing into one or more professionally bound books. Website: www.memories2treasure.com
My Forever Child
Keepsake items for sale to memorialize your child Website: http://www.myforeverchild.com
Southern Charm & Grace
Handmade Jewelry Quality handmade jewelry features sterling silver, semi-precious gemstones, and Swarovski crystals. See necklaces, bracelets, earrings, and jewelry sets. A portion of the proceeds is donated to SOFT. Website: www.scgjewelry.com
