ABCs of Disability Planning

You're not alone! When you’re here, you’re part of a globally connected community committed to eliminating the challenges of rare diseases. Global Genes is committed to providing information, resources, and connections to all communities affected by rare diseases. Global Genes is a 501(c)(3) non-profit organization dedicated to eliminating the burdens and challenges of rare diseases for patien...

New Disabled South, and their advocacy arm, New Disabled South Rising, are fighting for disability rights and justice in 14 states. Those states are Alabama, Arkansas, Florida, Georgia, Kentucky, Louisiana, Mississippi, North Carolina, Oklahoma, South Carolina, Tennessee, Texas, Virginia, and West Virginia. The 10 Principles of Disability Justice Source: Sins Invalid Intersectionality: Many disabl...

Jill Escher is the President of the National Council on Severe Autism. She is an autism research philanthropist ( Escher Fund for Autism ), a real estate investor who provides low-income housing for adults with developmental disabilities, a former lawyer, and a mother of two children with nonverbal autism. As an advocate, she is past president of the board for the Autism Society San Francisco Bay...

Hospice Navigation: The Compassionate Guide to End-of-Life Care Death is scary. No one wants to talk about it, and most of us aren't ready when it comes. It feels like the medical profession has made it their mission to delay the end of life, no matter the cost of pain and suffering. You have the right to go out on your terms, by choosing not to see further aggressive treatments. Hospice is an...

Once Upon A Gene  is a Podcast for families living with rare diseases. There are personal stories and resources shared to help connect us with our community. Although I only linked Apple podcast below, Once Upon A Gene is available on any player of your choice and has a YouTube channel. Effie Parks, originally from beautiful Montana, has become a guiding light in the rare disease community followi...

The Lucas Project provides recognition, respite, and resources to family caregivers of those with special needs. 16.3 million People in the U.S. are caregivers to a child with special needs. That number is staggering and also a wake-up call.  Most of us know of someone who is caring for a child with special needs and if you don’t personally know of someone, you can be assured that they are in your...

Embracing Another Normal integrates the deep expertise of Kris Burbank, thought leader and coach on parenting children with disabilities, and the wisdom and insights of Dr. Linda Hoopes, award-winning author and researcher on personal resilience. It articulates six fundamental challenges of raising children with disabilities, shares stories of how parents and families have navigated these challeng...

NR2F1 Foundation's mission is to support those impacted by an NR2F1 mutation, aka Bosch-Boonstra-Schaaf optic atrophy syndrome through education, advocacy, and research. BBSOAS, also known as Bosch-Boonstra-Schaaf Optic Atrophy Syndrome, is a rare neurological disorder caused by a disruption in the NR2F1 gene. BBSOAS is characterized by a wide array of clinical features, but the most common ar...

JelikaLite - Precision Autism Through Light ASD is a lifelong developmental disorder. The rates continue to rise, the cause remains unknown, and current solutions are inadequate. Autistic individuals frequently have difficulties with communication, social interactions, repetitive behavior, and focus, impacting their ability to integrate into society. JelikaLite believes that all children can lead...

Financial Services for the World’s Largest Minority - Visible National Trust. Visible National Trust is the first national, universally accessible disability financial planning and wealth management solution for special needs families. For families, Visible National Trust is a leap forward in disability financial services, providing intergenerational stewardship of funds while safeguarding access...

Supporting Independence and Improving Quality of Life - MapHabit. Habit-building tools are important for everyone to keep routines on track. MapHabit's unique, science-based system helps make each day safer, more productive, and less stressful for individuals and their caregivers. Their approach leverages the power of combining assistive technology with behavior learning. Their innovative syst...

Discover your potential as a family through live-in child care. Apex Social Group specializes in live-in care for families with special needs. Their caregivers have backgrounds in healthcare, therapy, and education. Apex Care Professionals are dedicated to child development and providing specialized support to families with special needs. With backgrounds in therapeutic, health, or educational fie...

It takes a village to raise a child with special needs. Meerkat Village connects you with your child’s providers and supporters in one place. Parents of children with special needs bear the daily struggle of keeping all their child's caregivers on the same page. It requires constant effort to ensure their child can make progress and thrive. Meerkat Village provides a forum for group collaborat...

When something feels off, Buoy it! Buoy helps people figure out health issues and find the right care. Their A.I. asks questions and helps narrow down what is going on based on your answers. No more guessing and filling in the blanks. It's like talking to your friend who happens to be a doctor. Editorial Standards They were founded based on the idea that searching for health information online...

Dr. Lawrence Fung  is an Assistant Professor (University Medical Line) at the Major Laboratories and Clinical Translational Neurosciences Incubator in the Department of Psychiatry and Behavioral Sciences at Stanford University. He received his BS with honors from the University of California at Berkeley, MS in Engineering from Johns Hopkins University, PhD from Cornell University, and MD from Geor...

Everyone has the ability to #BeImpactful - Philip C. Clark. Be Impactful, create a plan that enables your child with special needs to live a great life. ENABLE Special Needs Planning, LLC , believes that  everyone has the ability to be impactful  in the lives of others. This ability is what gives each of us a sense of purpose in life. "80% of families do not have a comprehensive plan for thei...

The Connected Parent has a comprehensive database and easy-to-use filters to help you connect with the local & online businesses you need, reviewed by families like yours. They are a comprehensive, one-stop hub of resources local to you and reviews for those hard-to-find services your family needs. With their easy-to-use filters, narrowing your search to find therapists, recreational activitie...

Improving Emotional Connections by Bridging Emotional Communication Across People and Screens Valence analyzes tonal data to classify emotions. Vibes for Apple Watch is live. Vibes uses haptic feedback so you can literally feel the vibes of the room as a vibration on your wrist. Feel unique taps for each emotion with a disappearing visual label that only appears when your screen is pointed toward...

Providing Patients and Caregivers a Voice   ⁠Rare Patient Voice⁠ connects patients and caregivers with the opportunity to voice their opinions through surveys and interviews to improve medical products and services. ⁠For patients and family caregivers⁠  — they provide study opportunities to voice their opinions on medical products and services while getting paid for their time.  ⁠Sign up here⁠ . ⁠...

Find the experts you need, with Our Place you are never alone! As a member of Our Place, you can access the Our Places Map! Here you will find Medicaid providers, barbers, swim schools, and anything else you need. It's all based on your location so you'll find what you need in your community.  With the help of the Our Place team and members like you, Our Places will grow with more and more...

Episode Transcript: https://docs.google.com/document/d/1BEe8i7gtN0tD4OZo6lzNcc5_omk3L_Ka/edit?usp=sharing&ouid=117716030289987185197&rtpof=true&sd=true Sue Ryan knows what it feels like to be standing at the edge of the abyss in our life – or to be down in the abyss – not knowing where to turn, what to do, or who to talk with. She navigated the transition from being the adoring daughte...

AutismDadvocate.org is an online support forum for dads with children with autism and about the commonalities we all face as fathers.    Frequently, fathers follow the American tradition of rugged individualism and rarely have an honest and earnest discussion on the challenges of fatherhood.  What does it mean to be an engaged father?  What are the tensions and polarities we all face as fathers? ...

Navigating Life Transitions: Coaching vs. Therapy Discover the Differences and Find Your Path to Personal Growth and Success Barbara Kay Coaching (BKC) provides custom coaching to individuals, teams, leaders and groups. As a business psychology and achievement expert Barbara is a personal trainer for business success. As a behavioral scientist and productivity coach, Barbara speaks nationally on a...

Andrew is an autistic self-advocate with over five years of professional experience helping autistic individuals be empowered in their lives by sharing his experiences in public speaking and freelancing work with organizations. Andrew was the keynote speaker for Autism Connection's 32 Annual Autism Conference in Springfield, Massachusetts. Andrew is also on various boards like in AANE (Speaker...

In this enlightening podcast episode, join us as we delve into the intricacies of LGBTQ+ financial and legal planning. Our guest, Mindy Neira, a seasoned financial planner with a focus on serving the LGBTQ+ community and individuals with disabilities, provides valuable insights into the challenges and considerations faced by this diverse group. From navigating complex legislation to understanding...