My Child was Diagnosed with FOXG1 Syndrome… Now What?
Here is a downloadable brochure that helps explain FOXG1 syndrome. Many FOXG1 parents print this (at a Staples, Kinkos etc.) so that they have them handy to share with their child’s doctors, therapists, and care team along the journey.
Follow FOXG1 Research on Social Media:
Follow the FOXG1 Research Foundation on Facebook / Twitter / LinkedIn / Instagram / and our News page to stay on top of all our news, announcements and real life FOXG1 stories.
Facebook Private Support Group - FOXG1 Research Parents Support Connect private group for all FOXG1 Parents and Caregivers worldwide
The Ultimate Resource Guide for Rare Disease
The Disability Resource Guide: We have partnered with rare disease mom, Sierra Phillips who has created the ultimate resource guide for those diagnosed with or caring for someone with: a rare disease, medical complexities, and disabilities.
Click HERE to get to the DRG website where you can download the extensive guide.
Download the DRG https://disabilityresourceguide.org
Free Air and Ground Travel Assistance for Rare Disease Patients
Angel Flight NE is, a 501(c)3 nonprofit organization that coordinates free air and ground transportation for medically stable patients seeking medical care for healthcare conditions including rare and ultra-rare diseases that requires them to travel hundreds if not thousands of miles for the specialized care they need. www.angelflightne.org
Free Air and ground transportation to help assist patients with rare diseases to access life-saving care
Talk to a licensed therapist who is also a FOXG1 mom
Free Therapy Session for FOXG1 Parents & Caregivers:
Pam Skillman, FOXG1 mom (of 29 years) and Licensed Therapist is here for you.
Pam is both a mom of 29-year-old Sam, who has FOXG1 syndrome, and also a professional licensed family therapist. Pam knows first-hand how emotionally challenging this journey can be, from the day of the diagnosis and on. For anyone grappling with the many questions and difficult emotions surrounding their FOXG1 child, Pam is willing to speak to you and offer her professional expertise and personal perspective .
Pam encourages FOXG1 parents and caregivers, especially, those newly diagnosed, to reach out and book a complimentary session to talk.
Pam Skillman and son, Sam.
Resources Compiled by FOXG1 Parents and Caregivers
Find Financial Assistance:
MEDICAID
Medicaid insurance (if you already have insurance you can use as supplemental to eliminate copays), respite care (skilled and unskilled), and more.
Medicaid covers care for children with disabilities, typically under Medicaid waivers specific to each state.
Visit KidsWaivers or your state’s Medicaid agency to learn about programs where you live.
MEDICARE
Better known as insurance for older Americans, Medicare also covers some younger people with disabilities. If you qualify for Social Security disability benefits, you can enroll in Medicare Part A, which covers hospitalization, and Part B for doctor visits and medical equipment.
SOCIAL SECURITY DISABILITY BENEFITS
The Social Security Administration provides cash benefits for children with disabilities and adults who became disabled before age 22 via Supplemental Security Income (SSI). SSI may be used for food, clothing and housing.
Applying and qualifying for SSI or SSDI requires an extensive process, and your child must meet clinical criteria.
Financial Resources for Parents of Children and With Disabilities:
Academy of Special Needs Planners: This organization of professionals serves and advises people and families with disabilities. It includes information on legal developments and a forum for exchanging best practices and providing information for consumers with disabilities.
The Arc Center for Future Planning: This guide is for people with intellectual or developmental disabilities to enable them to live as independently as possible after their parent or caregiver is no longer able to care for them.
The ARC of the United States: ARC's advocacy efforts are aimed to promote a future of inclusive play, work, worship, community, travel and more for individuals who have intellectual or other disabling conditions. Their website offers information about current activities, links to ARC chapters in all states, and ways to become involved.
Center for Parent Information and Resources: This site provides information about critical topics in special education and links to each state's parent training and information center, which are federally funded programs to help parents navigate this complex system.
Council of Parent Attorneys and Advocates (COPAA): Composed of families, special education attorneys and advocates across the country, COPAA takes cases that will advance education law for families, provides training for parents to advocate in their processes or to become special education advocates themselves and supports the rights of families with kids in special education.
Courageous Parents Network: This network empowers families and providers caring for children with serious illnesses by providing videos, podcasts and printed guides.
Family Voices: This family-led organization promotes partnerships at all levels of health care and aims to improve health care services and policies at all levels.
Federation for Children with Special Needs: FCSN provides support and help to parents of children with disabilities, their professional partners and their communities.
Kids' Waivers: This site provides information on state Medicaid waivers and other programs for children with disabilities or medical needs. It includes program details and state-specific details.
National Resource Center for Supported Decision-Making: This center offers resources, guides and toolkits to help families understand options available in the areas of health care, education and guardianship.
Organization for Autism Research: This organization provides resources for advocates, families and educators, including information, scholarships for students with autism and research grants.
Parent to Parent USA (P2P): P2P oversees a network of parent-to-parent programs across the country that offer emotional support to parents from trained volunteer support parents.
Special Education Legal Fund (S.E.L.F.): Created to help families effectively advocate for their child in the special education system, this funding source provides up to $5,000 in grants to cover qualifying special education legal fees for families in Connecticut and education for agencies supporting families with children with disabilities.
Special Needs Alliance: Long-term financial planning is complex for families, particularly around issues related to a loved one's disability. This site offers information about government programs, ABLE accounts, special needs or supplemental trusts, condition-specific organizations and related information.
Understood.org: This organization provides a wealth of resources for parents, including template letters to request an individualized education program (IEP) and guidelines for approaching getting support for kids with learning and thinking differences.
Rare Disease Organizations’ Resources:
National Organization for Rare Disease (NORD)’s Resource Center provides patients and caregivers with free webinars, fact sheets, infographics and other helpful materials to guide you on your journey with a rare disease.
Global Genes provides an extensive information center for patients and advocates. See Global Genes RARE Toolkits Here.
Head-to-Toe Resources to Care for Your FOXG1 Child:
FEEDING TUBE:
BLENDTEC FINANCIAL ASSISTANCE PROGRAM: Call Blendtec @ 1-800-748-5400 and ask about their application for financial assistance to purchase a discounted blender in order to begin a blended diet for your child. Refurbished blender comes to around $50.
FEEDING TUBE AWARENESS FOUNDATION: LINK HERE
FEEDING THERAPY APPROACHES/COURSES:
SOS APPROACH TO FEEDING: LINK HERE
MELANIE POTLUCK: An SLP that has written books, offers courses, has a YouTube channel, and makes simple graphics on her social media accounts with tips for feeding LINK HERE
THRIVE SPECTRUM PEDIATRIC TUBE WEANING/FEEDING PROGRAM: Based out of VA, they assist in feeding therapy and have a tube weaning program. They can travel to you and do therapy remotely. LINK HERE
GROWING INDEPENDENT EATERS TUBE WEANING PROGRAM: LINK HERE
NO TUBE (TUBE WEANING PROGRAM): LINK HERE
EOSINOPHILIC DISORDERS:
CINCINNATI EOE CLINIC: LINK HERE
CHILDREN’S HOSPITAL OF PHILADELPHIA (CHOP): LINK HERE
FACEBOOK GROUP EOSINOPHILIC FAMILY NETWORK: LINK HERE
FACEBOOK GROUP EOSINOPHILIC ESOPHAGITIS SUPER MOMS: LINK HERE
FACEBOOK GROUP EOE PEDIATRICS GROUP: LINK HERE
SPEECH MILESTONE REFERENCES:
Early Identification: LINK HERE
Birth-1 year: LINK HERE
1-2 years: LINK HERE
2-3 years: LINK HERE
3-4 years: LINK HERE
4-5 years: LINK HERE
SPEECH AND LANGUAGE THERAPY:
APRAXIA SONG ON YOUTUBE, FREE PRINTABLE: Sing this song everyday while showing large photos for working on sounds, labeling, comprehension, etc. See VIDEO HERE. GET PDF HERE.
TOBII DYNAVOX: Communication devices (offer trials), free courses, ipad apps. LINK HERE
COUGH DROP: AAC app - 2-month free trial, then $6 per month subscription or a $200 lifetime purchase option. LINK HERE
PRC: Communication devices (offer trials), free courses. iPad apps. LINK HERE
DENTAL CARE:
FOXG1 children are likely to suffer many more oral health problems, including tooth decay, gum disease, and dental injury. On top of that, sensory sensitivities also make effective oral hygiene routines and visits to the dentist challenging. HERE is a good RESOURCE Article.
PHYSICAL THERAPY:
THERATOG: Orthotic undergarment and strapping products that give individuals with sensorimotor impairment a highly effective modality for improving postural alignment, stability, movement skill, precision, joint stability, and prolonged muscle stretch. LINK HERE
SPIO SUIT: Aids with shoulder/trunk and hip stability, postural control, balance, coordination, and increased body awareness. LINK HERE
INTENSIVE PHYSICAL THERAPY PROGRAMS:
Cuevas Medek Therapy: LINK HERE
SMILE Therapy for Kids (Canada): LINK HERE
Napa Center: LINK HERE
CORTICAL VISION IMPAIRMENT (CVI) & HEARING:
DR. ROMAN (CVI) Perkins School for the Blind: LINK HERE FOR WEBSITE - LINK HERE FOR INSTRUCTORS
LITTLE BEAR SEES: LINK HERE
PATHS TO LITERACY: LINK HERE
FACEBOOK GROUPS: Cortical Vision Impairment Awareness: LINK HERE, Cortical Vision Impairment Professionals: LINK HERE, Cortical Vision Impairment DIY: LINK HERE
WONDER ONE LIGHT TABLE LINK HERE
BEST HEARING HEALTH TIPS LINK HERE
CVI & Communication AAC
VISION (CVI) APPS:
PEAK-A-BOO BARN: Great app for teaching cause and effect, visual coordination, following directions, naming farm animals, encouraging imitation of farm animal sounds, impulse control, core words like “open” or “go”, work on greetings, requesting, literary skills like inferencing LINK HERE; VIDEO HERE
POGG: An interesting green creature that provides animated video clips of actions. LINK HERE ; VIDEO HERE
HELPFUL SOCIAL MEDIA ACCOUNTS TO FOLLOW:
Everyday CVI (FB, Instagram)
Mommy and Me Milestones (FB, Instagram)
Get Your Baby Moving (Instagram)
Foxg1research (FB, FB Parents Connect Group, Instagram, Twitter, Linked In)
Thrivewithspectrum (FB, Instagram)
Adaptive Life Hacks (Instagram)
Tonguetieal (FB, Instagram, Website)
Childrensdisabilityproducts (Instagram)
Marysusanmcconell (Instagram)
Paths.to.literacy (Instagram)
Cvi.mom (Instagram)
Tinysuperheroes (FB, Instagram)
Eazyhold (Instagram)
Mommyandme.pt (Instagram)
SMILE Therapy for Kids (Instagram)
HELPFUL PODCASTS:
First Bite-Fed, Fun, Functional
Untethered
Tubes to Table
Mama Bear Podcast
Special Needs in Motion
Speech at Home
Teach Me to Talk
Curious Neuron
Talking with Tech (AAC)
Speechie Side Up
Mighty Littles
Lomah Special Needs Podcast
The Speech Link
DISCOUNTS!
We're partners with Billy Footwear! If you purchase through our affiliate, Billy will donate 15% of your purchase to the foundation!
FOXG1 Affiliate LINK HERE:
WORLDWIDE FOXG1 FACEBOOK GROUPS:
We are a global community! There are support groups set up as private, closed groups on Facebook for various regions around the world.
Facebook Support Group - FOXG1 Research Parents Support Connect private group for all FOXG1 Parents and Caregivers worldwide .
Facebook Support group for FOXG1 families in Canada
Facebook Support group for FOXG1 families in French - FOXG1 en français
Facebook Support group for FOXG1 families in the UK
Facebook Support group for FOXG1 families in Poland
Facebook Support group for FOXG1 families in Italy - FOXG1 Italia
Facebook Support group for FOXG1 families in Japanese - FOXG1 患者家族会 -
Facebook page for the German FOXG1 Research Foundation
Facebook Support group for FOXG1 families in Germany - FOXG1 Deutsche
Facebook Support group for FOXG1 families in Portuguese - Português
CAMPS and RESPITE
Hole in the Wall Gang Camp - The Hole in the Wall Gang Camp was founded in 1988 by Paul Newman to give every child – no matter their illness – the chance to “raise a little hell.” Through a variety of year-round programs offered onsite, in hospitals and clinics, and right in camper homes and communities, we serve more than 20,000 seriously ill children and family members each year.