May Newsletter- PANDASnetwork.org Event Schedule, Awareness Day Date Change & Our 10 4 Change Campaign

May 2016

DATES TO SAVE

National PANDAS and PANS AWARENESS DAY

Friday October 14,2016

You may have notice d the date has changed.

Please read here.

PANDAS Network & Georgetown University's CME (Continuing Medical Education) Conference

OPEN TO PARENTS!

Saturday October 15th and 16th

Regist ration will be live soon!

Check Facebook and your email for updates.

PANDAS Network Community Zoom Call!

"Zoom" is a free online tool we are using to connect with you. Simply download Zoom to your computer to attend one of our video conferences. If you prefer to attend the audio portion only we will provide a call in number.

Save the date for our next ZOOM community call. July 7th at 8PM EST.

A link to join the call will be posted on our Facebook page the day before the call.

During these calls we provide updates on activity in our community, share announcements and take live questions from you!

Our 10 4 Change giving campaign is live!

What is "10 4 Change?" In short it's your opportunity to partner with PANDAS Network on a monthly basis. Visit our website www.pandasnetwork.org and click on the 10 4 Change logo to be directed to sign up for a recurring monthly donation of just $10. Your tax deductible donation will automatically end after 12 months.

Why $10? - We realize that many in our community are challenged financially with caring for their child suffering with PANDAS or PANS. $10 seemed like a doable amount for most.

How will we use your gift?

Launch a national awareness campaign providing audience specific information. As funds permit, this would involve advertising is publications to reach physicians and parents. Creation of audience specific tool kits that can be hand delivered or mailed.
Fund new research that improves diagnosis and treatment of PANDAS and PANS.
Provide support directly to families via our website and support network

Provide tool kits that can be printed directly from our website that can help families work individually get insurance coverage AND work at the state level to change laws.

PANDAS and PANS Awareness Day, October 14th 2016

You may have noticed the date has changed...

In partnership with the International OCD Foundation, we have decided to move our Awareness Day to take place the final Friday of OCD awareness week that has been established by the IOCDF for many years. This move provides greater visibility for our Awareness Day as well as opportunities to cross promote with IOCDF. We are grateful to IOCDF for the work they do to raise awareness for our community and look forward to partnering with them in this way.

Please contact us if you have concerns about how to change wording in your proclamation requests.

Thank you to the many in our community who have worked locally over the years to establish awareness days!

How can I get involved with PANDAS Network?

We need volunteers! Our volunteers are divided into 5 committees:

Fundraising- Do you have creative ideas on how to raise money to cure PANDS and PANS? Do you enjoy graphic design and or writing? Are you passionate about seeing PANDAS Network grow?

Education Committee- This committee serves to educate educators (think principals, teachers, school nurses, school counselors) about PANDAS and PANS. This committee is also charged with providing the most up to date information for parents seeking IEP's and additional accommodations for their children. Are you an educator? Have you successfully worked with a school system to help your child? Do you have ideas for educators?

Family Support - This committee is made up of Moms and Dads who have "been there." Our goal is to connect the parents of newly diadianosed children to a Mom or Dad near them (geographically and in case similarity). Do you want to start a support group? Help others learn how to start a support group? If providing direct support is your passion this committee is for you!

Legislative Committee - This group works to create materials that parents can adapt to make change in their home state. Creating sate wide awareness days, changing insurance laws, speaking with local health departments about PANDAS and PANS, simply educating law makers about PANDAS and PANS via calls, letter writing and in person visits. Are you ready to help make change?

Grants Committee - There are many grant opportunities for our community! This committee helps us identify and complete grant applications. Do you love to write? Does the idea of seeing our community awarded funds to further the goal of early diagnosis and treatment excite you? - The Grant Committee is for you!

How do I learn more and get involved?

Email our Volunteer Coordinator:

Dottie Bryan at [email protected]

Make sure to specify which committee interests you!