FIRST to Know calls are a great way to connect!
Date: 11/15/2012
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| Moureen Wenik |
Social media is great. We can “check in” and keep up to date with 100’s of friends in a short amount of time, and without them even knowing! We can read blogs about families, we never met, yet we start to feel like we know them. Learning about what is important to people, what makes them tick, what is pressing in the world, are some of the reasons to engage in this world of Social Media. But what is missing? Voices – not written but audible. In the ichthyosis community, meeting others is one of the biggest hurdles. Social Media allows us to realize that we are not alone, we can ask questions to each other, and have discussions. When was the last time you picked up the phone to talk to someone; just to check in, see what is going on? Sometimes just hearing another person say the words you have been thinking or feeling is worth the time on the call.
FIRST to Know telephone calls are designed to bring voices together to talk about a topic or a situation. On one such call, Darier Disease, it allowed the callers to ask one another questions, and to find different ways to treat and control the skin issues.
On the last FIRST to Know call, educational advocate, Jennifer Cardena, Founder and President of The Right to Learn, LLC, lead the call. She discussed how you can maintain high standards of collaboration and cooperation with your child's IEP team. Her discussion talked about the benefits of working with an Educational Advocate and how the role of an advocate creates clear communication, and helps to clarify your parental rights and your child’s right to a Free and Appropriate Public Education. By bringing in an education advocate, you are signaling to the school a sense of urgency and the desire be an active participant in the process while working to resolve issues directly within the IEP team, avoiding unproductive conflict.
FIRST to Know calls are organized by many types of categories and topics. Calls range in disease specific, such as Darier or EI, to topical such as, How to Deal with Aging Skin or How Do I Get My Child to Start Managing His or Her Own Skin Care? Why not consider joining the next call to share your voice with others? You can “check in” with others, learn about what is important to them and perhaps hang up and realize you are not alone!The next FIRST to Know call is scheduled for Thursday, December 6, 2012 at 7:00 pm EST. The topic for discussion will be Harlequin ichthyosis. If you would like to join the call, email me at mwenik@firstskinfoundation.org.
