Welcome to Day 6 of the “12 Days of PANDAS Sucks”!
Every day from December 25 – January 5, you can expect to see a blog post from yours truly. You probably won’t be able to sing the “12 Days of PANDAS Sucks” as a song, but I think you’ll still like it. LOL! However, I will be posting a different version of the song “The 12 Days of Christmas” on each blog. Click here for Day 6’s version of the carol.
On this sixth day of PANDAS Sucks, I give to you SIX WAYS TO GIVE TO PANDAS.
The PANDAS/PANS Community relies heavily on people helping people. There is great information sharing among families online and in support groups. There are also organized groups on missions to help the PANDAS/PANS Community as a whole. It is a nice thing to give back to those groups that have helped us when we can and keep the giving circle going. Remember that the groups are being run by folks dealing with PANDAS/PANS too, and they see value in the work they do for others.
When we think about GIVING, we tend to think mostly about Monetary Donations, but there are many other ways to GIVE besides just cash. You can also do the following:
- Send Letters of Support and Thank You’s.
- Volunteer Your Time and Talents.
- Like the Organizations Pages/Accounts on Social Media.
- Share an Organization’s Materials and Information with Others.
- Link to the Organization if You Have a Web Site and Acknowledge/Promote Their Work.
- AND, You Can Make Monetary Donations to Advance the Organizations Missions.
Here are some of those organizations, and one group you might not think about despite how much we talk about PANDAS.
PANDAS PHYSICIANS Network: The PANDAS Physicians Network (PPN) is a non-profit, and their goal is to help physicians understand, diagnose and treat PANS and PANDAS by providing to them quality research, diagnostic and treatment tools. Donations help maintain these tools and help fund the research needed to continue to educate physicians and mental health professionals about PANDAS and PANS. This work can help to change the face of mental illness forever by further proving that the immune system can cause such psychological distress. PPN recently announced an upcoming email initiative to reach physicians. If you would like to donate to this cause, click here.
PANDAS/PANS Advocacy & Support: PANDAS/PANS Advocacy and Support is a non profit organization that is focused on building public awareness of Pediatric Autoimmune Neuropsychiatric Disorders and providing support to families struggling with the medical, educational, social-emotional, and financial hardships of these disorders. Since 2011, the PANDAS / PANS Advocacy & Support group has grown from two concerned moms to more than 375 families strong across the Midwest. Recently, the group announced its grant program for families with a child/children living with PANDAS/PANS who are facing financial difficulty due to the treatment and/or symptoms of their diagnosis. If you would like to donate to this cause, click here.
Empowered Hands For PANS (EHP): This group is a registered, non-profit organization. EHP was founded in January 2013 by, Mary Rose Crombez, a 14 year old girl at the time, who has struggled with PANDAS since she was 7. The group’s mission is to spread awareness about PANDAS/PANS and provide support to children and families with PANDAS/PANS. We do this by providing PANDAS/PANS children and teens with care packages through IVIg treatment. We also provide emotional support to children and teens with PANDAS/PANS as well as their parents and siblings. In less than 2 years, EHP has made and delivered 50 care packages and homemade fleece blankets. Each care package costs about $40 to make and includes the following: a fleece blanket; a coloring book, activity book, or sketch book; colored pencils, crayons, or markers; a DVD; earbuds; a small toy; and a carrying bag. EHP has also supplied portable DVD players to several IVIg clinics in order for the child or teen to watch the DVD provided. If you would like to donate to this cause, click here.
My Kid Is Not Crazy – PANDAS/PANS Documentary: This film tracks the journey of PANDAS/PANS children, their families, and the medical professionals who treat them. Since 2013, University of Florida researcher and documentary film producer, Tim Sorel, has trekked to 37 cities in 24 states to capture the heartbreak that is PANS and PANDAS. He has been embedded with several families as they try to navigate a medical system that is clearly stacked against them. In addition, Sorel has interviewed the world’s foremost doctors, scientists and caregivers who have studied and treated PANDAS/PANS. The goal of the documentary is to educate and raise awareness. Filming is nearly completed and post-production is underway in both Florida and New York City. The film’s Kickstarter campaign has ended but you can still make a donation. (Planned release for Spring 2016.) If you would like to donate to this cause, click here.
PANDAS Network: This organization is dedicated to improving the diagnosis and treatment of children with PANDAS and PANS. With a network of doctors, researchers and scientists, PANDAS Network strives to collaborate with subject matter experts, build public awareness, provide family support, and gather data and resources to better inform parents and the medical community about PANDAS and PANS.Your donation allows PANDAS Network to continue their dedication to improve the diagnosis and treatment of children with PANDAS and PANS. If you would like to donate to this cause, click here.
World Wildlife Fund: I talk about how much I hate PANDAS, but I do NOT hate Panda Bears. While we believe the numbers of PANDAS/PANS patients could conservatively be 1 in 200 kids, Panda Bears are classified as an endangered species with a very high risk of extinction in the near future. Although carnivores, the panda’s diet consists almost exclusively of bamboo. Despite being one of the most popular animals in the world, giant pandas are threatened by habitat fragmentation and unsustainable development. It is estimated that 1,800 pandas remain in the wild. WWF is the primary international conservation organization protecting pandas and their habitat.There are several options if you would like to adopt a real Panda Bear. If you would like to donate to this cause, click here.
Again, there are many ways to give to an organization. Thanks You’s and donations of Time/Talent can go a long way. The idea here is to give back to those that help you and to pay it forward too. You might have other PANDAS/PANS groups that you support, and on behalf of all the groups, let me say THANK YOU!
Until tomorrow…and Day 7 is a gonna be a good one. 😉
Tell us why YOU think PANDAS Sucks. 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, 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. See also 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.