PANDAS/PANS Awareness Day is October 9th. Every day in October, PANDAS Sucks will be posting an Action you can take for PANDAS/PANS Awareness OR PANDActionS. (I was soooo excited when I thought of that. haha).
I’ve been working on more Advocacy and Action versus just Awareness this year. PEOPLE SHOULD ALREADY BE AWARE OF PANDAS/PANS…ESPECIALLY DOCTORS!!! The GR8 ADVOC8 on the 8’s series is one way you can take get more into Advocacy and take Action. In fact, you might recognize some of the PANDActionS from GR8 ADVOC8s and previous Advocacy/Awareness posts.
These PANDActions for Awareness are little Actions you can take to help the PANDAS/PANS Community. By taking Action, even if much of it is to still spread Awareness, you’re doing something good. I’ll give you a PANDActionS reminder over on Facebook each day too. 🙂
(Oh! And my standard disclaimer is always to only do what you want to do and to NEVER feel guilted into doing anything. If anyone deserves a big break, it’s a PANDAS/PANS Parent. Jump into Advocacy and Action when and if you’re ready. For much of your PANDAS/PANS Awareness, self-care is the best thing you can do for you, your child, and everybody else.)
PANDActionS…31 Actions for Awareness
1. Read this list of 31 PANDActionS and choose at least 3 you want to do during the month of October 2016. Or choose more than 3. I practice what I preach in PANDAS/PANS Advocacy. I know I will be doing more than 3 of these things this month, but it might take longer for me to get through all 31 flavors of Advocacy/Awareness PANDActionS. 🙂
2. Like the PANDAS/PANS Awareness Day Facebook Page on Facebook. This Page is a collaborative effort among groups to ensure PANDAS/PANS Awareness Day information is reaching the Community. I’m happy to be helping with the Page along with other PANDAS/PANS Parents and colleagues.
3. Submit a PANDAS Silver Lining you’ve found. Yes, PANDAS Sucks, but good stuff still happens too. You might have to really look for it, but don’t lose sight of it. The new series “Your Words: PANDAS Silver Linings” encourages us to “Find the Light in our Dark Days.” Click here.
4. Change your profile picture on Facebook to your reflect your status as a PANDAS/PANS Parent. There’s a personalized option being offered by the PANDAS/PANS Awareness Facebook Page. Simply email a photo to firstname.lastname@example.org and you will be emailed back your personalized awareness day profile picture. This is one way we’re giving back on that Page to give back to a community of strong, determined parents, caregivers, grandparents, and loved ones. You get to create Awareness while showing the love you have for your PANDAS/PANS child(ren). *It may be quicker, but please allow at least 24 hours for the turnaround of the profile picture. Here’s a sample photo of somebody I love. <3
5. Print out very good quality color copies of the PANDAS Physicians Network’s Flyer and share them in your community. This awesome tool was created directly by PANDAS Physicians Network for parents to use. It has definitions, symptoms, diagnostic criteria, and more! Drop them off at with Physicians, Physician Assistants, Nurses, Psychologists, Etc…. Find the flyer here. Thank you PANDAS Physicians Network! (Note: Since this needs to look very professional, my advice is to take them to your local copy shop to print. You don’t want to hand a doctor a blurry flyer on cheap because it’s bad for PANDAS/PANS. Make sure they’re really good quality and readable to make the best impression. Taking that extra step will definitely be worth it.)
6. Learn about PANDAS/PANS and Homeopathy on a Facebook Live Event on October 6th. Homeopaths specializing in Autism and PANDAS/PANS, will be presenting information about the treatment of Autism/PANDAS using homeopathic medicine.
7. Submit a reason YOU think PANDAS Sucks. The PANDAS Sucks blog exists to tell our collective story. The series “Your Words: PANDAS Sucks Because…” is a chance for you to tell the world about PANDAS/PANS and why it sucks. Click here to submit yours. I am also posting a “PANDAS Sucks Because…” meme every day over on Facebook, and you can see them on Instagram or Pinterest.
8. Watch for the special October edition of PANDAS Sucks’ GR8 ADVOC8 on the 8s post that day and participate. Please complete the State of the PANDAS/PANS Community Survey. Your information is confidential, and your answers will help provide a snapshot of the current state of the PANDAS/PANS Community in 2016. While this is a non-scientific survey, your responses will be tabulated and reported in a future PANDAS Sucks blog post. The more information we collect the better we can tell the story of Who We Are as the PANDAS/PANS Community. Please do consider taking a few minutes to answer the questions. Be heard. Thank you! Read more about the survey here.
9. Share at least 3 PANDAS/PANS-related posts from social media on October 9th…PANDAS/PANS Awareness Day. There will be plenty of PANDAS/PANS posts to choose from that day. It’s kind of like a party with how much information gets shared with the world on October 9th. Be sure to watch PANDAS Sucks for special blog posts. And it’s PANDAS Sucks 3rd Birthday on October 9. This blog was born on the first PANDAS/PANS Awareness Day in 2013. 🙂
10. Order the book “PANDAS and PANS in School Settings” by Patricia Rice Doran. You can keep the book for yourself for self-study or donate it to your child’s school. In the spirit of spreading PANDAS/PANS Awareness, I was able to negotiate a 20% discount on the book if you order from the book publisher (Jessica Kingsley Publishers). Here’s what your 20% savings looks like: Original price: $24.95…20% off discount: $19.96.In order to receive 20% off PANDAS and PANS in School Settings, simply call the publisher at 866-416-1078 and quote the code “PAND16” to receive your discount. Offer is good 10/9/16 – 11/9/16 only. (US customers only. Standard shipping and handling rates will apply.)
11. Send a note of appreciation to your state’s Governor if s/he proclaimed October 9, 2016 as PANDAS/PANS Awareness Day. Here’s the tally for 2016…23 states: Kentucky, Illinois, Massachusetts, Missouri, Arizona, Michigan, Connecticut, New York, New Jersey, New Hampshire, Virginia, Nevada, Delaware, West Virginia, Indiana, Ohio, Wisconsin, Rhode Island, Minnesota, Oklahoma, Missouri, Washington, Maine. And our neighbors up North: Saskatchewan, Canada. Plus Miami, FL Woohoo! Y’ALL ROCKED IT!!! A few other states applied, but proclamations were not granted…some states just say no. Write and say THANK YOU to the Governors who said yes. Find the state office info here.
12. Make a donation to the PANDAS Physicians Network. Want more doctors to know about PANDAS/PANS? Then why not directly support the organization that is dedicated to helping medical professionals better understand PANDAS/PANS through real-time information and networking. PPN also plans to be the research hub for new projects and funding. We can help them! Click here to donate.
13. Follow a new PANDAS/PANS accounts on social media. It’s likely that you’ve somehow missed an organization or individual that is helping the PANDAS/PANS Community by posting oodles of info on social media. Here are a few Facebook Pages you could consider clicking and Liking: PANDAS/PANS Advocacy & Support, New England PANS/PANDAS Parent Association, Midwest PANDAS/PANS Parent Association, Joshua’s Missing Peace, PANS Life, PACE Foundation, PANDAS Physicians Network, and Kentucky PANDAS/PANS Support. These were just off the top of my head. Doing a search for PANDAS or PANS will give you more options on social media.
15. Give a hug to somebody affected by PANDAS/PANS because October 15th is Sweetest Day. You might hug yourself or hug your child. Or if you are at the PANDAS/PANS Conference in Washington DC, bring a “Free Hugs” sign, and you’ll stay busy.
16. Share something new that you learned at the PANDAS/PANS Conference in Washington DC if you attended. Use social media to share your new knowledge. It’s that easy to education folks about PANDAS/PANS.
17. Send a Thank You to a doctor or teacher that has helped you along this journey with your PANDAS/PANS child.
18. Buy your favorite PANDAS/PANS book and donate it to your local library. There are other parents out there that need access to information about PANDAS/PANS.
19. Send your favorite PANDAS/PANS buddy a Thank You note. Most of us probably have those other PANDAS/PANS Moms that we know get it so we let it all hang out with them.
20. Share the Parent & Patient Resources from the Moleculera Labs’ web site. There’s an excellent selection of resources for Parents including brochures, insurance info, videos, and more. Use this info to share with your doctors, teachers, family, and friends to educate them about PANDAS/PANS.
21. Send a letter or email to a federal, state, or local government official about PANDAS/PANS. Here is a source to find your Senators or Representatives in Washington. You can also search for your state offices here. Share what’s on your mind when it comes to PANDAS/PANS.
22. If you have a PANDAS/PANS t-shirt, wear it today while you are out and about. See how many conversations you can start and how many minds you can blow. People are usually shocked that strep infections can be so damaging, especially to children’s brains! Wear your shirt and be noticed!
23. Consider telling your story on PANDAS Sucks in a guest blog. I will help you write your story. Send me a message here.
24. Buy the book PANS, CANS, and Automobiles by Jamie Candeleiria Greene. You can keep the book for yourself for self-study or donate it to your child’s school.
25. Volunteer your time and talents to a PANDAS/PANS parent organization. Not all donations need to be monetary. You can think of your time as money if that helps. This is definitely PANDActionS in Action, eh?
26. Write an editorial. People do still read newspapers, and even if they don’t (haha), there are electronic versions of newspapers online. You might write a fact-based editorial that lets people know about PANDAS/PANS .
27. Give a PANDAS/PANS Presentation. Can you talk? Do you know how to create a PowerPoint presentation (or know somebody that does)? If so, then you could give a talk to a community group or your child’s school or anywhere. 🙂
28. Share PANDAS/PANS articles with medical professionals and/or teachers. You can find some great articles to share here. Seeing the PANDAS/PANS information in black & white helps a lot.
29.Get Family And Friends Involved. Want to get even more people talking about PANDAS/PANS? Educate your family and friends. Give them articles to give to their doctors. Let them read the books. Share your story with them. Share this blog so they can be Advocates too and spread PANDAS/PANS Awareness with PANDActionS.
30. Take a power nap. You’ve been busy this month with your PANDActionS and spreading PANDA/PANS Awareness. You earned FREE NAP. Wake up feeling refreshed and choose something from earlier in the list.
31. Pass out PANDAS/PANS info with your Halloween candy. PANDAS/PANS is terrifying! I can think of few things scarier than a strep infection or other illness that goes awry and attacks your child’s brain. Spread the word in your neighborhood.
“Alone we can do so little; together we can do so much.” That is an excellent sentiment. It may not seem like you’re doing much on your own, but when you combine all of the efforts of everybody…WOW!!! There really is room for whatever you want to do in PANDAS/PANS. We can all do our part, and we have our own pet projects and things that we feel strongly about within the Community. I wish I’d never met any of you, but I mean that in the kindest way since I wish none of us were dealing with PANDAS/PANS and that it didn’t exist. I am proud to work with such a great group of people who are so dedicated to helping the kids and families. PANDAS Sucks…but PANDAS Parents Rock!
So choose from these PANDActions for Awareness or come up with your own. Please share what you’re doing for PANDAS/PANS Awareness Day with me on social media or here. We’ve come a long way, Baby. It may not seem like it sometimes, but we really have. Be sure to watch the PANDAS Sucks blog throughout October, and especially on October 9th, PANDAS/PANS Awareness Day.
Tell us why YOU think PANDAS Sucks. Click here.
Have YOU found a PANDAS Silver Lining? Click here.
We post these reasons in a blog series.
Want to send a message to Sarah? Click here.
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 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. She is also the Director of Kentucky PANDAS/PANS Support, which strives for more awareness, support, and understanding of PANDAS/PANS. Sarah was a Parent Contributor to the book “PANDAS and PANS in School Settings.” Find 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.
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