Local moms start nonprofit and organize a walk to help their children fight a life-changing illness
The Southeastern PANS/PANDAS Association’s (SEPPA) 2019 PANS Awareness Walk will be held on Saturday, October 19 at Gerrard Landing Park in Roswell.
The Southeastern PANS/PANDAS Association’s (SEPPA) 2019 PANS Awareness Walk is named in loving memory of Dr. Maziar Rezvani, a local immunologist who helped many Georgia families before his death earlier this year. The dual purpose of the walk is not only to unite families across the Southeast that are dealing with PANS/PANDAS allowing them to share experiences and offer support to one another, but also to raise funds.
Families should arrive at 10 a.m. with the walk beginning at 11 a.m. There will be inflatables for the kids and time to visit with PANS/PANDAS families from across the Southeast. There is no charge to participate in the walk or the activities of the day. For families affected by PANS or PANDAS that would like to participate in the walk, they can register at https://secure.qgiv.com/event/seppawalk2019/ or at the park on Oct. 19.
The Southeastern PANS/PANDAS Association (SEPPA) was founded in 2017 by a group of metro Atlanta moms. In the last two years their board of directors has more than doubled and currently includes members from AL, FL, GA, TN andWV. The SEPPA 2018 awareness walk held in Peachtree City, Ga. raised just under $50,000.
The purpose of raising funds is so that SEPPA can continue their mission: working for children and families with PANS/PANDAS to expand access to timely, appropriate, insurance-based medical care in our region. SEPPA’s 2020 plans include providing grand rounds at children’s hospitals across the Southeast as well exhibiting at American Academy of Pediatrics conferences and the National Conference in October with more than 15,000 physicians in attendance. Through these conferences, SEPPA will be able to put information about diagnosis, treatment, and research into the hands of thousands of doctors across both the Southeast region and the entire nation.
The fundraising goal set for SEPPA’s 2019 Walk is $75,000. SEPPA is asking the public to help them reach their goal by donating at https://secure.qgiv.com/event/seppawalk2019/.
ABOUT PANS AND PANDAS
Pediatric Acute-onset Neuropsychiatric syndrome (PANS) and Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcal Infections (PANDAS) are caused by infections that result in sudden neuropsychiatric symptoms including OCD, tics, aggression, anxiety, depression, developmental regression, sleep problems and more. Depending upon severity of symptoms and triggers, PANS/PANDAS is treated using multiple approaches that vary from behavioral therapies to antibiotics, steroids, and psychiatric medicines. In extreme cases it may require immune-modulating therapies including IVIG, plasmapheresis and more.
Unfortunately, many PANS/PANDAS children do not get the help they need because of delayed diagnosis, access to care or denial of recommended treatment from insurance companies. This protracted denial and appeal process delays treatment for these children and puts them at risk of further decline and potential long-term disability. These burdens are inevitably shouldered by the family and the state in terms of costs associated with social services, medical treatments, and education. In extreme cases, children may require long-term hospitalization in psychiatric hospitals. By providing an early diagnosis and intervention, these high costs could be avoided and ensure a healthy and happy childhood for many children across the Southeast.
Find Out More
If you would like more information about this topic, please contact Jennifer Farris by emailing Jennifer@sepans.org or calling 706-983-0093
