Development & Diagnoses

Little Legs Big Heart Foundation

The Little Legs Big Heart Foundation is dedicated to empowering and supporting individuals with skeletal dysplasia and their families. We strive to redefine inclusivity and acceptance within the dwarfism community, encouraging everyBODY to resiliently live life beyond height. Through advocacy, community support, and educational initiatives, we’re striding towards a world where differences are celebrated, and every set of ‘little legs’ dances to the rhythm of a big heart; navigating their journey with the best quality of life possible no matter what medical choices they make. At the end of the day, a skeletal dysplasia diagnosis not only involves overcoming physical challenges but also navigating the emotional, societal, and mental aspects of living with dwarfism.

Camp Ellellbee

A Family Camp for Households Navigating Life with Skeletal Dysplasia
Camp Ellellbee isn’t just a weekend away, it’s a weekend that brings us home. Designed for individuals living with skeletal dysplasia and their families, this free, all inclusive program is more than just a getaway, it’s a chance to connect, recharge, and be part of a growing, resilient community.

Created by the Little Legs Big Heart Foundation, presented by GutMonkey, and sponsored by BioMarin, Camp Ellellbee exists to support families navigating life with skeletal dysplasia…together.

What You Can Expect
Each camp takes place at a peaceful, family-friendly outdoor location (Please see the map and list of general locations below). We keep things relaxed, playful, and supportive by creating space for both adventure and downtime.

Your weekend will include:
Facilitated activities/breakout sessions
Breakout sessions, family games, and time to explore outside
Simple, cozy cabins with bunk beds
All meals provided (dietary needs welcome)
Shared stories, laughter, and real connection

Who Can Join
Camp Ellellbee is for households where at least one immediate family member lives with any form of skeletal dysplasia.

That includes:
Children and their parent(s) or legal guardian(s)
Primary caregivers (like grandparents) who live in the same household

Extended family members who don’t live in the same home aren’t eligible unless special circumstances apply. If you’re unsure, reach out – we’re happy to talk it through.

If you have any questions, feel free to reach out at camps@gutmonkey.com

Ear Protectors – Baby

Loud sounds can be quite harmful and startling for babies, and every 8th child suffers from permanent hearing loss! Ear Protectors limits your infant’s exposure to loud noise during the early years. Whether it affects sensory regulation, impairs sleep or potentially damages the hearing at loud or busy events such as fireworks, ear protection for babies and toddlers is essential.
Alpine Muffy baby and toddler ear protection has a safe and practical design, without any hard parts that can be harmful or dangerous. Ear caps are made with multiple layers of noise reducing foam and soft padding for good closure. The upgraded headbands are anti-slip, comfortable and easily adjustable.
Thoroughly tested and proven to reach noise reduction at 23 dB SNR in accordance with US & EU Regulations. Sustainable hypoallergenic material without silicone, BPA free; no allergic reactions or irritations! The baby noise cancelling headphones come with a carrying pouch.
Alpine is an innovator and leader in quality hearing protection with 25 years R&D experience. All products are designed and produced in the Netherlands. A wide variety of products ensure that you can do what you love to do without risking ear damage!

This is one example of Ear Protectors was recommended by one of our families. Please find one that works best for you and your child.

Affiliate link included.

Trailhead Community

Trailhead Community was originally inspired by the success of Stepping Stone Support Center, a sister company established in 2013. The Support Center provides prevocational and life skills training, job placement, job coaching services, social events and community connection. It now serves more than 100 individuals with developmental disabilities to live meaningful and productive lives. With this success in one aspect, it became quickly evident that another important piece was missing for adults with developmental disabilities: Homes of their own!

The individuals we work with are first and foremost ADULTS. Like all adults, they deserve to live independently in a place of their own. So in 2016, a group of parents, Stepping Stone staff and other friends all came together for the purpose of creating a non-profit to address this need. Stepping Stone Cmmunities was born and the mission established: creating and designing an extraordinary opportunity for people to come together in an integrated and intentional apartment community!

After hundreds of hours of research and discussion, Stepping Stone Communities selected its first project- Trailhead Community, an apartment building with 77 units for both adults with DD and members of the general population with plenty of community space for meals and recreation. This was an ambitious project and it has grown since then!

The final result is an 83 unit complex where 50% of the units are allocated for adults with developmental disabilities and the other 50% for neuro-typical residents. The building will include state-of-the-art technology and “Universal Design” features to promote independence and safety for all residents. A cooperative management model will integrate all residents to make decisions about how their community will operate!

There will be on-site concierge staff to provide 24/7 oversite for the building, social events, meal preparation and encourage mutual exchange and support between tenants. The building will have many unique and intentional features to promote community including a sport court, sound-proof multimedia room for music, large screen viewing and mini jam sessions, an art studio, fitness room, a community kitchen and common dining room serving optional meals daily, and large common areas both indoors and outdoors!

Potty Training Watch for Kids

Some kiddos respond better to a reminder to sit on the potty from a non-parental source. This is one example of an objective way to make the suggestion to sit on the potty rather than a request from a parent. The potty watch can help build independence and self-sufficiency within your kiddo.

CHCO First 1,000 Days Series

This is a 3-part series put on by Children's Hospital Colorado describing infant development and the role parents and other caregivers can play in supporting children's health and wellbeing. Each video is only a few minutes long but provides important information about how to help their child grow and learn and reach their greatest potential while supporting their expanding social and emotional skills.

Cerebral Palsy Foundation

People with cerebral palsy rarely get the interventions and supports they need at the moments they need them. As such, their lives are often deeply and unnecessarily affected.

The Cerebral Palsy Foundation is a 501(c)3 tax-exempt organization that defines and addresses Moments of Impact – the times at which interventions and insights, if properly implemented, have the power to change lives.

We then work to better understand how to effect change and implement it. We seek out the best thinkers to form collaborative networks which work together to bring about transformation. Finally, we share our work with others so it will have the greatest possible impact.

Our Collaborative Networks bring together many of the country’s most prestigious medical institutions, as well as innovative thinkers in diverse areas such as technology and media, in order to accelerate not only the development of critical advances, but also their delivery.

While our work of course includes important strides being made toward the eventual prevention of cerebral palsy and developmental disabilities, our focus is on the translational research, clinical application and knowledge transfer that can dramatically change lives today.

Independent Living Skills Checklist for Students with Visual Impairments

Independent living skills (ILS) are the abilities students need to manage their day-to-day tasks, such as eating skills, meal preparation, clothing care, household organization, personal grooming, and time and money management. Many of these skills occur naturally at home. It is critical to develop ongoing communication with school staff to ensure systematic instruction, frequent practice, and consistency in routines.

National Center on Health, Physical Activity and Disability (NCHPAD)

Founded in 1999, the National Center on Health, Physical Activity and Disability (NCHPAD) is a public health practice and resource center on health promotion for people with disability. NCHPAD seeks to help people with disability and other chronic health conditions achieve health benefits through increased participation in all types of physical and social activities, including fitness and aquatic activities, recreational and sports programs, adaptive equipment usage, and more. NCHPAD actively works to create healthy equity for people with disability by providing individualized information, referral and consultation services to people with disability, families, caregivers, policymakers, community members, health care practitioners and public health professionals through an expansive array of web-based materials and health communication endeavors. Additionally, NCHPAD conducts national training initiatives that educate disability and non-disability service providers in community health inclusion. NCHPAD is creating local level sustainability and inclusion through Inclusive Health Coalitions across the United States that promote community and individual behavior change focusing on leadership and planning strategies which support community health inclusion. The collaborative nature of NCHPAD is based on the Center’s strong belief that strategic partnerships are necessary for successful development and sustainability of Community Health Inclusion. NCHPAD welcomes organizations who are working to decrease chronic disease and obesity to join in the inclusion efforts.

NCHPAD is the premier resource for information on physical activity, health promotion, and disability, serving persons with physical, sensory and cognitive disability across the lifespan.NCHPAD’s features a variety of resources and services which can benefit all ages and populations and can be found online at www.nchpad.org.

RiteCare Scottish Rite Childhood Language Program (SRCLP)

In the early 1950s in Colorado, the Scottish Rite of Freemasonry of the Southern Jurisdiction of the United States initiated a program to help children with speech and language disorders. The results obtained from this program led to the establishment of RiteCare Scottish Rite Childhood Language Program (SRCLP) clinics to provide diagnostic evaluation and treatment of speech and language disorders, as well as learning disabilities.

Today, there are SRCLP clinics, centers, and special programs operating or planned for children and therapists located throughout the United States. Each facility is staffed by speech-language pathologists or other trained personnel. Through the support of Scottish Rite members, these clinics, centers, and programs continue to increase.

The value of this philanthropy has long been apparent. Tens of thousands of youngsters across the United States have been helped significantly. With the good work of dedicated clinicians and parents, the Scottish Rite has achieved successes that could only be imagined a few years back. Children who might have remained educationally behind for a lifetime can now talk, read, and lead productive lives.

SimpliFed

When SimpliFed was founded, our mission was to democratize access to baby feeding, supporting families through one of the most difficult and isolating parts of new parenthood. Due to its significant connection with maternal mental and physical health, we’ve created a Maternal Health Operating System (mOS), providing virtual care models and support for patients across the peri and postnatal period.

We believe that compassionate, culturally competent care regardless of geography and status, is a right not a privilege. And with this new operating system we are ready to turn the tide on the poor maternal health outcomes we see in the United States.