Ah, a new year.
When looking back on your 2023, remember that it is more than okay if your most remarkable accomplishment is that you survived! It is in fact, an incredible accomplishment. Yep. Sometimes, that is where we set the bar in PANS/PANDAS. But it is not a low bar; quite the opposite, it is among the highest. I don’t need to tell you that a year fraught with PANS flares can throw us off-axis in a blink of an eye. As parents and patients, we don’t know what to expect in the upcoming year. PANS/PANDAS and its remitting and relapsing nature hold us in its grips, constantly wondering if the forthcoming year will be better or the dreaded looming fear that it might be worse.
But one thing I do know is that every patient and family living with PANS/PANDAS deserves every effort we can make to improve their situation, whether that be full recovery, managed recovery, or reduction of chronic symptoms. ASPIRE will continue to work tirelessly to help shorten the time between the onset of symptoms and the start of appropriate treatment and support in order to improve the lives of those affected by PANS/PANDAS.
I want to thank our community for continuing to support ASPIRE’s work. We would not exist if it weren’t for all of you. Our volunteers, all of whom have been on this journey for many years, navigating the highs and lows of living with PANS, advocating for better services, and supporting families and patients, are the heart and soul of our efforts. We are so grateful for all the professionals, on our Professional Advisory Board and those who work on independent projects with us, all of whom have donated their time and energy to help us create educational resources for families and other professionals. Without them, we could not produce all the well-researched materials and webinars we provide. Thank you to our donors who invest in ASPIRE; you keep our proverbial lights on and allow ASPIRE to deliver all our programs while rooting tirelessly for our community and providing hope. And last but certainly not least, we thank the patients and families who inspire us to keep advocating, educating, and supporting!
So, this year, let’s move forward together with hope and determination. We will keep the following aspirations on our ASPIRE vision board; please join us.
Keep aspiring for a world where more researchers, doctors, and therapists are not just willing to learn more about PANS/PANDAS but are intellectually invested in appropriately diagnosing and treating these conditions. May the entire medical community remember that they need to rule out medical conditions first instead of just assuming that all behaviors are only psychiatric.
Keep aspiring for a world where schools understand the difference between symptoms of neuro-inflammation and choice-based behaviors and how to appropriately adjust their approach when supporting students with PANS/PANDAS. A healthy child with a non-inflamed brain functions better and learns more readily; health is paramount.
Keep aspiring for a world where PANS treatments are covered by insurance. May legislators understand that treating PANS/PANDAS promptly and appropriately is not a burden on their state’s financial bottom line. Rather, providing coverage is the best way to ensure their constituents reach their full potential without creating unnecessary and frankly unethical financial and emotional burdens on patients and their families.
Keep aspiring for a world where children and adults are screened for PANS/PANDAS as soon as symptoms start so we can lead healthy and fulfilled lives. And where patients and families are supported so that we do not feel alone on this path to healing and are not expected to survive on resilience alone.
We wish you all a healthy, safe, happy 2024! ASPIRE will keep advocating, educating, and supporting.
The ASPIRE Board