Here are a few of our favorite resources for parents/caregivers of children with complex medical needs (listed alphabetically):
Legacy of Hope Austin lauched as a non-profit organization in Austin, TX in August of 2010. From that point on the director, Julie Lyles Carr, began pushing to start several programs under one firm goal–to provide fun, celebratory, free services to families of children with special needs. This was the catalyst for starting 2night2dream (date night/respite care), 2learn2dream (tutoring), and 2dance2dream (dance classes and performances).
Complex Child is a monthly online magazine written by parents of children with special healthcare needs and disabilities. It is intended to provide medical information, along with personal experiences, in simple language that other parents can understand.
The Feeding Tube Awareness Facebook page is the largest online support group for pediatric tube feeding in the world with 40,000 “fans” and counting. Volunteer staff members dedicate countless hours each week to answering every question asked on the Facebook page, constantly striving to improve the quality and quantity of information provided on the website, and building relationships with providers of services that are vital to those with feeding tubes. All of this is done while balancing careers, families, educational pursuits, and caring for their own medically complex children.
Hand to Hold provides ongoing support, education and navigation resources to parents and serves to fill the service gap that currently exists for families who have had a child in the NICU or who experienced a loss. By providing a holistic approach to preemie care in partnership with leaders in the field of prematurity and child health and development, Hand to Hold has the power to improve the lives of parents of preemies, babies born with special health care needs and those that experience a loss due to these challenges. Services provided directly to parents are done free of charge.
JourneyFEST is a group of special needs families who work together to enrich each others’ lives. We all want a life full of good things, but on the Special Needs Journey we instead deal with difficulty after difficulty. JourneyFEST sprinkles in a little fun.
The mission of sMiles 4 Sammy Foundation, Inc. is to encourage people to see that every day is a gift, that a healthy body is a blessing and to provide encouragement and support to families of medically fragile children and/or children with medically complex special needs.
Texas Parent to Parent (TxP2P) is committed to improving the lives of Texas children who have disabilities, chronic illness, and/or special health care needs. TxP2P empowers families to be strong advocates through parent-to-parent support, resource referral, and education. In addition, TxP2P educates professionals about the unique needs of our children with the goal of improving care and opportunities for our children. Lastly, TxP2P is dedicated to championing the efforts of a diverse set of parent support groups and advocacy on behalf of our children’s well-being.
U.R. Our Hope is a registered 501 (c)(3) non-profit organization that assists individuals and their families on their journey to diagnosis,or helps them navigate the healthcare system with a rare diagnosis. Our mission is to serve individuals with undiagnosed and rare disorders through education, advocacy, and support in order to bring hope through knowledge, empowerment, and healing. We assist families in the Austin area, and throughout Texas, the United States and beyond.