Learn more about the Resource Directory

Welcome to the St. Mary’s Healthcare System Resource Directory

This resource directory is for families/caregivers of children who have medically complex needs or long-lasting conditions that require extra health care and support services.

The information in this directory is provided to help you find resources to assist you with finding help for your child and family. The range of care/disability/health issues varies amongst children so the information may or may not pertain to your child.

What you'll find

After a family learns that their child is ill parents/caregivers typically begin to think about how they can best care for their child. The resources in this directory include agencies, service providers, advocacy organizations, and other resources to assist with providing a quality life for children with medically complex needs.

To find a resource enter your area of interest in the search box on the side bar and the location in the box located on the top of the screen. The directory is intended to assist you with being the best advocate for your child. Although we attempt to keep the directory current resources change constantly.

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Category: EMOTIONAL SUPPORT

  1. Friends of Karen friendsofkaren.org

    Provides emotional, financial and advocacy support for children with a life-threatening illness and their families.

    Contact Information

    212-308-1378

    Address

    116 East 16 Street, 5th Floor, New York, NY 10003

  2. Hydropcephalus Association hydroassoc.org

    The Hydrocephalus Association provides support, education and advocacy for people whose lives have been touched by hydrocephalus and the professionals who work with them. We strive to ensure that families are empowered with educational materials, informed about the latest research, and have access to quality health care. We advocate for increased research and funding to advance understanding, improve diagnosis and treatment, and find a cure.

    Contact Information

    (301) 202-3811
    (888) 598-3789

    Address

    Hydrocephalus Association 4340 East West Highway, Suite 905 Bethesda, MD 20814

  3. March of Dimes Foundation marchofdimes.com

    Works on behalf of the prevention of birth defects and provides support to families affected by birth defects (prematurity, heart effects, genetic diseases)

    Contact Information

    212-353-8353

    Address

    New York Chapter: 515 Madison Avenue, 20th Floor, New York, NY 10022

  4. Muscular Dystrophy Association mda.org

    The Muscular Dystrophy Association is the world’s leading nonprofit health agency dedicated to finding treatments and cures for muscular dystrophy, amyotrophic lateral sclerosis (ALS) and other

  5. North Shore Family Guidance Center northshorechildguidance.org

    Individual Therapy,Family Therapy,Group Therapy,Parent Education,Behavior Management Programs,
    Family Support Programs,,Medical Management,Consultation Services

    Contact Information

    (516) 626-1971

    Address

    480 Old Westbury Road Roslyn Heights, NY 11577-2215

  6. Pediatric Brain Tumor Foundation curethekids.org

    The Pediatric Brain Tumor Foundation is the world’s largest non-governmental funder of childhood brain tumor research. We serve the more than 28,000 children in the United States who are living with the diagnosis of a brain tumor. Our programs include free educational information about brain tumors, college scholarships, emotional support.

    Contact Information

    800-253-6530

    Address

    Pediatric Brain Tumor Foundation 302 Ridgefield Ct. Asheville, NC 28806

  7. Sacred Heart Church Bayside sacredheartbayside.net

    Sr. Kathleen Masterson-Bereavement Counselor—group and individual

    Contact Information

    718-224-5695

    Address

    215-35 38th Ave. Bayside, NY 11361

  8. Sibling Support Project siblingsupport.org

    The Sibling Support Project is a national effort dedicated to the life-long concerns of brothers and sisters of people who have special health, developmental, or mental health concerns

    Contact Information

    Local Sib Shops
    NYC- Annette Spallino, LCSW,AHRC-NYC
    83 Maiden Lane, New York,  NY 10038 , Phone: 2127802592 http://www.ahrcnyc.org
    Sibshop Description: Sibshops are held for several sessions during the year on Saturdays for children ages 5-15 who have brothers and sisters with developmental and medical disabilities.

    NYC- Rachel Mirkin,TBD
    New York, NY ,Phone: 339-234-0295
    Sibshop Description: The NMD Sibshops group is geared toward children who have a brother or sister with Neuromuscular Disease. We are currently in the beginning stages of planning our Sibshops and we hope to hold our first event this Fall!

    Brooklyn Alyse Appelbaum
    Ohel Bais Ezra,1563 49th st,Brooklyn, NY 11219 map
    Phone: (718)6863497,http://www.ohelfamily.org
  9. Sibsplace southnassau.org

    SIBSPlace was conceptualized to assist children who have brothers and sisters with cancer or another devastating illness.  These children typically struggle with feelings of loss of control and consistency, isolation, jealousy, embarrassment, guilt, abandonment, sadness, fear and anxiety.  At SIBSPlace, the children discover a safe environment where we balance attention to their emotional needs and much needed levity and diversions from stress.

    Contact Information

    (516) 374-3000

    Address

    1420 Broadway • Hewlett, NY 11557 •

  10. Spina Bifida Association spinabifidaassociation.org

    Provides support, education, and research on behalf of spina bifida patients and their families.

    Contact Information

    (202) 944-3285

    Address

    Street Address: 1600 Wilson Blvd. Suite 800 Arlington, VA 22209 Please send all correspondence to: P.O. Box 17427 Arlington, VA 22216