This is a list of resources we found available, along with a brief explanation of our experiences with each. Resources for children with special needs vary throughout the United States and world, so this list may not be specific to your experience.
Support Resources
This is an incredible organization that matches people through Facebook. The intent is to match children and adults with different needs (or life-threatening illnesses) to able-bodied adults who can literally run (or do other workouts) for their buddies. It's an extremely positive, uplifting group despite the struggles that many of the children face. It's a place where you can get prayers and support any hour of the day if you post a need.
There are also affiliated groups for siblings, which we use for our older son:
IR4 Siblings: The Unsung Heros and one to remember those who lost their battles:
Kerri On: I Run 4 Remembrance.
This organization (MTT) has chapters throughout the United States. Teddy is a Captain with MTT. That means he has a team of angels who push a specialized race chair to enable him to compete in races. The adaptive chairs can be used for biking or running, and they even have Captains who complete triathlons. As much as Teddy enjoys the race experiences, the best part for us as a family has been the incredible people and the amazing support network we've developed through MTT. It's a part of our tribe, a place where Teddy was instantly accepted for who he is.
This is a Wisconsin-based organization that supports families who have a child or children with disabilities. They offer in-person events that we've attended, such as sensory-friendly Santa, as well as opportunities throughout the state. During the pandemic, they provided a couple different activity baskets that our boys were able to enjoy. They provide support for the entire family.
CDG Resources
This is a worldwide organization for all CDGs. It is a wealth of information, much of which is in lay language to help everyone understand CDGs. There is information on research, development and family surveys.
This resource allows CDG patients and their families to register to create a database of CDG patients. Your information can remain private, or you can choose to share it for various purposes. There are also research studies available where you can participate.
This is a resources based in the United States. Again, it's a way to share your information to connect with others with similar diagnoses. There's tremendous resources here, including medical information in understandable language, opportunities to connect and even grant opportunities when they are available.
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