ABCs of Disability Planning

The Lucas Project provides recognition, respite, and resources to family caregivers of those 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 neighborhood; probably hiding behind closed doors isolated and exhausted.

Caregivers often project the perception that “everything is okay,” when in fact, it probably is not okay and they would so appreciate having someone reach out and lend a hand.  It is our job as a society to surround these caregivers and support them through the difficult times, because a child is only as healthy as the caregiver, and society is only as healthy as the families within it. At The Lucas Project, we care for the caregivers.

Get Jess Ronne's books from Amazon: https://amzn.to/4b6jQCF

Lisa Whittle's books from Amazon: https://amzn.to/3S8EbhQ

Atomic Habits: https://amzn.to/48OhrdY

Connect to learn more:

Website: https://thelucasproject.org/

Email: [email protected]

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For more information about True North Disability Planning you can find us here:

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Waypoints - ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠https://waypoints.substack.com/⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠

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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 challenges, and provides a framework for connecting successful strategies to the key building blocks of resilience.

Connect to learn more:

Link to "Embracing Another Normal" (Amazon): https://amzn.to/3Okf6PP

Kris Burbank's Substack "Another Normal": https://anothernormal.substack.com?utm_source=navbar&utm_medium=web&r=f674k

Linda Hoopes Substack "Prosilience": https://prosilience.substack.com?utm_source=navbar&utm_medium=web&r=f674k

Kris' Website: https://www.krisburbank.com/

Prosilience Website: https://prosilience.com/

Transcript: https://docs.google.com/document/d/1e26ABhn-7y3MBAvt1bcOOH2c4_LEUEc8/edit?usp=sharing&ouid=117716030289987185197&rtpof=true&sd=true

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For more information about True North Disability Planning you can find us here:

Web: ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠https://truenorthdisabilityplanning.com/⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠

Waypoints - ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠https://waypoints.substack.com/⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠

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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 are vision impairment caused by optic atrophy, developmental delay, and intellectual disability. There are currently a few hundred known cases of BBSOAS worldwide with diagnoses rapidly increasing every month.

The phenotypic spectrum of Bosch-Boonstra-Schaaf optic atrophy syndrome (BBSOAS) is broad and variable, but the most well-established characteristics include developmental delay/intellectual disability and visual impairment (including optic nerve atrophy, optic nerve hypoplasia, and cortical visual impairment). Other common features include hypotonia, oromotor dysfunction, and mild and inconsistent dysmorphic facial features. Morphological changes in brain structures including thinning of the corpus callosum, and autism spectrum disorder are also considered common. Individuals are at an elevated risk of seizures, including infantile spasms.

Genotype-phenotype correlations have been proposed, with individuals with mutations in the DBD typically showing a more severe phenotype, and individuals with whole-gene deletions and truncating mutations tending to have moderate to mild symptoms. Individuals with point mutations outside of the DBD most often manifest the mildest phenotype.

BBSOAS is considered a static encephalopathy and has not been shown to be progressive/degenerative. There is no progression of the eye phenotype known, including no known progression of optic atrophy.

Email: [email protected]

Website: https://nr2f1.org/

FB: @NR2F1 Foundation

IG: @nr2f1foundation

Transcript: https://docs.google.com/document/d/1tiJV3qJmtUPPokZvdbIdlBEF7pgbXEyi/edit?usp=sharing&ouid=117716030289987185197&rtpof=true&sd=true

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For more information about True North Disability Planning you can find us here:

Web: ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠https://truenorthdisabilityplanning.com/⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠

Waypoints - ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠https://waypoints.substack.com/⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠

Facebook: @TrueNorthDisabilityPlanning

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JelikaLite - Precision Autism Through Light

JelikaLite believes that all children can lead fulfilling and productive lives. That is why they are developing Cognilum, an innovative solution to enhance the child's communication skills while reducing a child's troublesome autism symptoms, enabling them to improve their lives.

Cognilum is a therapeutic wearable device that provides non-invasive brain stimulation with near-infrared light, sensors, and a machine-learning personalization platform.

Connect to learn more:

Website: https://jelikalite.com/

Sign up for early access: https://jelikalite-23877686.hubspotpagebuilder.com/jelikalite-early-access-campaign

Email: [email protected]

Floreo: https://floreovr.com/

GoMo Health: https://gomohealth.com/

Transcript: https://docs.google.com/document/d/1nZa0hJ0k-u9b78ppXScSst4sIdJ1gMyY/edit?usp=sharing&ouid=117716030289987185197&rtpof=true&sd=true

As an Amazon Associate, I earn commissions from qualifying purchases.

For more information about True North Disability Planning you can find us here:

Web: ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠https://truenorthdisabilityplanning.com/⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠

Waypoints - ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠https://waypoints.substack.com/⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠

Facebook: @TrueNorthDisabilityPlanning

X (Twitter): @NeedsNavigator

Financial Services for the World’s Largest Minority - Visible National Trust.

For families, Visible National Trust is a leap forward in disability financial services, providing intergenerational stewardship of funds while safeguarding access to important benefits, and including the services of global and national financial institutions trusted by millions of people.

BlackRock provides ETF model portfolios to the Trust and Huntington National Bank is the Trust’s custodian and sub-accountant. Visible’s complete solution includes all trust services, investment, custody, accounting and tax services, payments, and continuous access to account information. Visible’s asset-based fees are lower than prevailing fees for alternative services and include many benefits not available elsewhere.

For financial advisors, Visible National Trust is a complete packaged solution for disability financial planning integral to implementing comprehensive wealth management and retirement plans for families that include a loved one with a disability. Visible seamlessly connects families and financial advisors.

FMDT Pooled Trust interview: https://spotifyanchor-web.app.link/e/sIlTDdkjBFb

Intro to Special Needs Trusts: https://spotifyanchor-web.app.link/e/7OYmDE3jBFb

Estate Planning, Beyond the Basics: https://spotifyanchor-web.app.link/e/zTvINqikBFb

Connect to learn more:

Website: https://visiblenationaltrust.com/

Phone: 800-760-4234

Transcript: https://docs.google.com/document/d/15hjvYTbbAfsHAJKWJJLni0gBTMf6GYLN/edit?usp=sharing&ouid=117716030289987185197&rtpof=true&sd=true

As an Amazon Associate, I earn commissions from qualifying purchases.

For more information about True North Disability Planning you can find us here:

Web: ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠https://truenorthdisabilityplanning.com/⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠

Waypoints - ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠https://waypoints.substack.com/⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠

Facebook: @TrueNorthDisabilityPlanning

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Supporting Independence and Improving Quality of Life - MapHabit.

Waypoints Technology article: https://waypoints.substack.com/p/technology-what-can-it-do-for-you

Website: https://www.maphabit.com/

Phone: 1-855-515-4332

FB: @MapHabit

IG: @maphabitatl

Transcript: https://docs.google.com/document/d/1i48APJnbSRIXKSxfzknkdn0q39iByvo5/edit?usp=sharing&ouid=117716030289987185197&rtpof=true&sd=true

As an Amazon Associate, I earn commissions from qualifying purchases.

For more information about True North Disability Planning you can find us here:

Web: ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠https://truenorthdisabilityplanning.com/⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠

Waypoints - ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠https://waypoints.substack.com/⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠

Facebook: @TrueNorthDisabilityPlanning

X (Twitter): @NeedsNavigator

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.

They specialize in providing exceptional care to families with special needs, including autism, developmental delays, ADHD, cerebral palsy, and more. They source our extraordinary candidates from prestigious European and American universities, vocational training schools, hospitals, and globally recognized organizations.

Website: https://apex-social.com/

Email: [email protected]

FB: @ApexSocialGroup

Meet their candidates: https://apex-social.com/meet-our-candidates/

Transcript: https://docs.google.com/document/d/12JQx4fshjh71GErprASRFQzEyAZf8hJj/edit?usp=sharing&ouid=117716030289987185197&rtpof=true&sd=true

As an Amazon Associate, I earn commissions from qualifying purchases.

For more information about True North Disability Planning you can find us here:

Web: ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠https://truenorthdisabilityplanning.com/⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠

Waypoints - ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠https://waypoints.substack.com/⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠

Facebook: @TrueNorthDisabilityPlanning

X (Twitter): @NeedsNavigator

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.

It requires constant effort to ensure their child can make progress and thrive. Meerkat Village provides a forum for group collaboration and communication among the entire village of adults supporting the child. From therapists, teachers, and specialists to grandparents, neighbors, and friends, everyone is welcome in Meerkat Village.

"Superheroes on the Spectrum" (book)

Connect to learn more:

Website: https://meerkatvillage.com/

FB: @MeerkatVillage

IG: @meerkatvillage

Link to Transcript: https://docs.google.com/document/d/1XuW2kOFR-mI-G6oTvUqiQxn_-dGadkWB/edit?usp=sharing&ouid=117716030289987185197&rtpof=true&sd=true

As an Amazon Associate, I earn commissions from qualifying purchases.

For more information about True North Disability Planning you can find us here:

Web: ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠https://truenorthdisabilityplanning.com/⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠

Waypoints - ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠https://waypoints.substack.com/⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠

Facebook: @TrueNorthDisabilityPlanning

X (Twitter): @NeedsNavigator

When something feels off, Buoy it! Buoy helps people figure out health issues and find the right care.

They were founded based on the idea that searching for health information online shouldn't be scary and misleading. To combat this, their technology and all of their content are:

Learn more:

Website: https://www.buoyhealth.com/

Email: [email protected]

FB: @BuoyHealth

X: @buoyhealth

IG: @buoyhealth

Episode Transcript: https://docs.google.com/document/d/15tQLcHmm2uLZl2BvIHtqZRyU7RicKTCt/edit?usp=sharing&ouid=117716030289987185197&rtpof=true&sd=true

As an Amazon Associate, I earn commissions from qualifying purchases.

For more information about True North Disability Planning you can find us here:

Web: ⁠⁠⁠⁠⁠⁠⁠⁠⁠https://truenorthdisabilityplanning.com/⁠⁠⁠⁠⁠⁠⁠⁠⁠

Waypoints - ⁠⁠⁠⁠⁠⁠⁠⁠⁠https://waypoints.substack.com/⁠⁠⁠⁠⁠⁠⁠⁠⁠

Facebook: @TrueNorthDisabilityPlanning

X (Twitter): @NeedsNavigator

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 George Washington University. Dr. Fung completed his general psychiatry residency, child & adolescent psychiatry fellowship, and postdoctoral research fellowship at Stanford University.

Dr. Fung is a researcher and clinician specializing in autism and the father of a neurodiverse teenager on the autism spectrum. He serves as the principal investigator of studies investigating the neurobiology of autism by state-of-the-art molecular neuroimaging and bioanalytical technologies.

He studies novel pharmacologic interventions, including pregnenolone. Dr. Fung is the director of the Stanford Neurodiversity Project, which strives to uncover the strengths of neurodiverse individuals and utilize their talents to increase innovation and productivity of society as a whole. Dr. Fung directs the Adult Neurodevelopment Clinic, which specializes in assessing and treating adults on the autism spectrum. 

Neurodiversity at Work: https://med.stanford.edu/neurodiversity/NaW.html

Imitation Game (movie): https://www.imdb.com/title/tt2084970/

Stanford Neurodiversity Project: https://med.stanford.edu/neurodiversity.html

Transcript: https://docs.google.com/document/d/11Zrtm4dCWxvXYTtWME-f8clJijOn5rns/edit?usp=sharing&ouid=117716030289987185197&rtpof=true&sd=true

As an Amazon Associate, I earn commissions from qualifying purchases.

For more information about True North Disability Planning you can find us here:

Web: ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠https://truenorthdisabilityplanning.com/⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠

Waypoints - ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠https://waypoints.substack.com/⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠

Facebook: @TrueNorthDisabilityPlanning

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