The CHARGE Syndrome Foundation recently released the Winter 2018 newsletter! This is a wonderful resource to get a recap on what is going on in the CHARGE world. The newsletter highlights different resources available to families with a CHARGE diagnosis, new products that may be helpful to your CHARGER (this newsletter it is pieces to help glasses stay in place), and other announcements to look forward to. We want to make sure everyone got a chance to read it, but you are always able to get the newsletter sent directly to your email as well.
In this edition- we found several things that we thought were important to highlight.
- CHARGE Toll Free Hotline; did you know there is a hotline you can call at anytime if you are newly diagnosed with CHARGE or need extra support or guidance through the journey? This hotline is provided by CHARGE Syndrome Foundation and Sheri Stranger – Director of Outreach- heads it up. The hotline was created so that you never have to go about this alone, Sheri wanted to make sure everyone had at least one resource to use for any questions or concerns they have pertaining to CHARGE Syndrome. If you ever need to use the toll free hotline, simply call 855-5CHARGE (855-524-2743).
- Provider Database; another project of Sheri Stranger is the Provider Data Base. This is a free tool anyone can request when looking for providers. She has created this list with the help of families across the country that highlights known physicians who work with and are comfortable with CHARGE diagnosis. These providers are added to the list when a family recommends them to her. What a great way to use and help your CHARGE community!
- Do you need help finding a provider or know a provider that may be helpful to another family? If so, please email Sheri Stranger at firstname.lastname@example.org
Another way to help out the CHARGE community is to become a part of a committee. Are you looking for a way to join the team and help make things happen? The CHARGE Foundation is looking for committee members for the following committees; Communications Committee, Fundraising Committee, Resource and Materials Committee, Family Engagement Committee, and Conference Planning Committee. If you feel one of these committees may be of interest to you, follow the link to the newsletter where you can learn what each committee entails and how to sign-up.
Lastly, the 2019 conference date has been announced! We are excited to go to Dallas, TX next to be part of this event. Mark your calendar for August 1-4, 2019!