This PANDAS Sucks Blog Series, GR8 ADVOC8 on the 8s, focuses on ways that you can Advocate and spread Awareness and Understanding about PANDAS/PANS all year long. Published on the 8th of every month, we’ll share at least 3 easy ideas on how you can advocate for PANDAS/PANS. Sometimes I add a Bonus Advocacy activity. You can practice PANDAS/PANS Advocacy any day of the year, and this series will give you some old and some new ideas on how to be a GR8 ADVOC8 for PANDAS/PANS. And I will always preach the importance of self-care because you have to put on your oxygen mask before you put the mask on other people. 🙂
Here are some action items PANDAS/PANS GR8 ADVOC8s can take in SEPTEMBER:
1. Go LIKE the PACE Foundation Facebook Page. The PACE Foundation is based in Phoenix, Arizona, but they are a national non-profit and their reach will be felt Community wide. The PACE Foundation spearheaded the new Children’s Postinfectious Autoimmune Encephalopathy (CPAE) Center of Excellence, which opened on August 30, 2016. Located at the University of Arizona Steele Children’s Research Center, the new “center of excellence” with treat and conduct research in neuropsychiatric disorders, PANDAS and PANS. The PACE Foundation’s web site says they are “dedicated to improving the diagnosis, treatment and quality of life of persons with Pediatric Autoimmune Neurological Disorders through advocacy, education and research. PACE helps individuals overcome these difficulties by providing accurate and timely information for patients and families living with Pediatric Autoimmune Neurological Disorders and offers valuable resources to these individuals” Follow the PACE Foundation on social media to keep up with their important activities.
How is this PANDAS/PANS Advocacy? The PACE Foundation IS an advocacy group. Here’s the PACE Foundation’s Mission: “We are committed to the identification, prevention, development of treatments and possible cures for Pediatric Autoimmune Neurological Disorders. We strive to raise public awareness about these diseases and their effects on individuals, families and society. The PACE Foundation aims to be one strong voice to urge the government and private sector to listen to our concerns and take action to address this urgent global health crisis.” Sounds like Advocacy to me. Liking the PACE Foundation’s Facebook Page shows your support and keeps you up-to-date on everything the group does. We’ll be hearing a lot from the Pace Foundation. 🙂
2. Support the PANDAS/PANS Awareness Day Activities of the various organizations. PANDAS/PANS Awareness Day is October 9, 2016. That’s not that far away! Does your organization have anything planned for that day? If so, send me a note so I can be sure to promote the events on this blog and on the PANDAS/PANS Awareness Day Facebook Page (Psst…make sure you like that page!). Here are a few events you can support. PANDAS/PANS Advocacy & Support/PAS is running the 2nd Annual PANDAS Dash on September 25 in Villa Park, IL. The Midwest PANDAS/PANS Midwest Parents Association is putting on the Putting for PANDAS Golf Tournament in Sunset Hills, MO. Click here to buy a bright tie-dye t-shirt from PAS and then wear it on PANDAS/PANS Awareness Day from PAS (sale ends 9/18).
I have some PANDAS/PANS Awareness Day stuff up my sleeve for the PANDAS Sucks blog, so stay tuned. (PANDAS Sucks will be 3 years old on 10/9). Kentucky PANDAS/PANS Support/KPPS doesn’t do much. We are going to donate PANDAS/PANS books to various libraries in the state. Our members are also going to go to out for a meal/drinks in Lexington and in Louisville. As the Director of KPPS, the first round is on me…keep that in mind if you ever move to Kentucky. 😉
How is this PANDAS/PANS Advocacy? Pretty much all of the activities that groups do for PANDAS/PANS Awareness Day will count as Advocacy. I even count the KPPS meal/drinks as Advocacy because we usually at least tell our waiter/waitress who we are and why we’re there. 😉 You can be sure to like all of the social media accounts of your favorite PANDAS groups and non-profits, especially the PANDAS/PANS Awareness Day Page. Share info on PANDAS/PANS Awareness Day. Organize an event for your group or participate in an activity. Or do nothing. Seriously, if there is ever a group of people that need a Day Off, it’s the Parents/Caregivers in the PANDAS/PANS Community. Take care of yourself. <3
3. There’s still time to get registered for the PANDAS/PANS Conference in October. Presented by PANDAS Network and MedStar Georgetown University Hospital, there’s still time to make it to the meeting in Washington, DC on October 15-16. Wondering what will be covered? Here’s the Course Description: “The diagnosis and treatment of Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal infections (PANDAS) and Pediatric Acute-onset Neuropsychiatric Syndrome (PANS) remain important challenges in pediatric medicine as children continue to suffer from the debilitating symptoms of both disorders. These challenges are met with radiologic imaging and streptococcus surveillance for early diagnosis, both reviewed at this conference. Medical and surgical therapies discussed at this conference will include deep brain stimulation, tonsillectomy, and behavioral therapy. Additionally, continuing and novel research will be presented, including a review of tonsil culture, cytokine, and animal model studies. This conference strives to present these topics in an organized, concise, and complete manner to educate physicians who may encounter children suffering from PANDAS/PANS.”
How is this PANDAS/PANS Advocacy? You’ll be getting information about the latest PANDAS/PANS research. You’ll get to meet the leading doctors and researchers. You’ll meet other parents and connect with the leaders of PANDAS/PANS organizations. You will be able to take what you learn and use it to help your own child and share it with others. (Note: I’ll be at the Conference. Look me up to say HI. 🙂 )
Update on Last Month:
You can read the August GR8 ADVOC8 Post to see the 1, 2, 3 suggestions.
1. Order the Book PANS, CANS, and Automobiles by Jamie Candeleiria Greene. Done! You can order this book here.
2. Order the book PANDAS and PANS in the School Setting by Patricia Rice Doran. Done! You can order this book here or here. (P.S. Check out Chapter Two for Jesse’s Story by Me.)
3. Send a Thank You. I wrote five thank you’s to folks that have helped my family and a few other people who have helped families in the Kentucky PANDAS/PANS Support Community. Some were emails and some were actual thank you cards. 🙂
Those are the advocacy ideas for September. Next month will bring PANDAS/PANS Awareness Day on October 9th. Are you ready? 🙂
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Sarah is a PANDAS Mom to her awesome son, Jesse. She spends much of her time on Facebook, making to-do lists, and listening to music, especially Depeche Mode. She drinks a lot of coffee, likes a good red wine, and has been known to hide chocolate in her pantry. Sarah really thinks PANDAS Sucks (the autoimmune disorder, NOT the bears!). PANDAS Sucks exists to tell the collective story about PANDAS/PANS. Sarah wants to empower other PANDAS Parents and let them know they’re not alone. Also see PANDAS Sucks on Facebook, Instagram, Twitter, and Pinterest.
Note: Please do not ask for doctor referrals or specific medical advice. This blog/web site is for info and support purposes only. I’m not a doctor.