PANDASnetwork.org

MY FAMILY'S PANDAS JOURNEY

My brother and I suffered from an autoimmune disease when we were little kids. This disease is known as PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections). We now know that PANDAS is not rare but rarely diagnosed.

My mom, Diana Pohlman, endured a lot of fear and anxiety trying to find a proper diagnosis for my 7-year-old brother. She wanted to turn negative into a positive and ensure no other families had to suffer the way mine did, so she created the PANDAS Network in 2009 to support families and fund research.

THERE IS A BIG PROBLEM.

The NIH is funding VERY little PANDAS research. Therefore, we must take matters into our own hands if we want to find a cure!

WHY IS THE PANDAS NETWORK WORTHY OF DONATIONS?

The PANDAS Network is worthy of your donations for the following reasons.

1. With a few part-time workers and volunteers, each dollar raised has a maximum impact on research.

2. The PANDAS Network has allowed scientists access to a rare cohort of people with PANDAS. This access allows scientists to study human tissue samples that otherwise wouldn't occur without the PANDAS Network.

3. Even with minimal donations ($600,000 since 2009), they have been able to fund research that has made MASSIVE contributions to families. For instance, thanks to PANDAS Network donations we now know:

a. *Which immune cells contribute to PANDAS

b. *Which autoantibodies contribute to PANDAS

c. *Children respond positively to IVIg therapy

*=studies funded by the PANDAS Network!

WHY DONATIONS ARE STILL NEEDED

However, there is still so much that we do not know about PANDAS because our regulatory health agencies are not funding PANDAS grants. Also, there are many pediatricians who still fail to properly diagnose PANDAS. In fact, it takes roughly 2 years to get a proper diagnosis (assuming one is made at all). Many children suffer needlessly before they are given medications or therapies that help reverse the symptoms. Lastly, there is no cure for this devastating disease.

YOUR DONATIONS POTENTIAL IMPACT

Awareness Advocate $10 - $90

Your contribution will help spread awareness about PANDAS through awareness and advocacy campaigns.

Research Supporter $100 - $900

Fund a portion of the research efforts to understand and develop effective treatments for PANDAS. Donations will contribute to funding young investigators, (PhDs and MDs) specializing in PANDAS, fostering the next generation of experts in the field.

Cure Crusader $1,000 - $10,000+

As a Cure Crusader, you're making a monumental impact by supporting comprehensive research projects aimed at taking steps toward finding a PANDAS cure. These include research grants to deserving scientists as assessed by the PANDAS Network scientific review board and the PANDAS Network board of directors.

MY GOFUNDME CAMPAIGN

For these reasons, I humbly ask you to support my GoFundMe campaign. Every dollar I raise will go directly to the PANDAS Network to fund PANDAS research and advocate for PANDAS patients and their families.

CAN'T DONATE? YOU CAN STILL HELP!

Even if you're unable to donate, you can still make a difference by sharing this campaign on social media with three people affected by PANDAS or encouraging others to share their stories using our hashtag #PANDAScure.

From the desk of “The Real STEM Sadie”:

P.A.N.D.A.S. stands for Pediatric Autoimmune Neuropsychiatric Disorder Associated with Strep - a phrase I've had memorized since I was 7 years old. One night, 5 year-old Sadie went to bed completely normal and woke up in the morning a totally different child - anxiety riddled, critically ill, on-the-spectrum, and immunocompromised. Diagnosed years later, my family learned that I had contracted strep - totally normal for a child, right? - but in this rare case, the strep traveled to my brain and launched an attacked causing permanent damage. This resulted in many mental health issues including ADHD, OCD, Tourette's/tics, depression, anxiety, number dyslexia, issues reading social cues, insomnia, suicidal thoughts, and being put on the autism spectrum. Some of these neurodivergent qualities plague me to this day, but I've worked hard to thrive in this life with them and to eliminate others. Now an adult, I'm considered very high functioning and am a very vocal advocate for PANDAS awareness. As one of the very first cohorts, I participated in clinical trials and struggled with the lack of medical knowledge and acceptance by the medical community. Over the past two decades, amazing medical strides have been made in identifying and treating children with PANDAS - but what about the PANDAS that grew up into adults? There's VERY little research being conducted on PANDAS adults so the future struggles with this disease are unknown - well, that's terrifying…

I'm raising money to benefit PANDASnetwork.org, and any donation will help make an impact. Thanks in advance for your contribution to this cause that means so much to me.

More information about PANDASnetwork.org: PANDAS Network is dedicated to improving the diagnosis and treatment of children with PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections) & PANS (Pediatric Acute-onset Neuropsychiatric Syndrome). Armed with an impressive 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

Want to join me in making a difference? On my journey to Black Belt I'm raising money to benefit PANDASnetwork.org, and any donation will help make an impact. Thanks in advance for your contribution to this cause that means so much to me. When my older sibling Gray became very ill overnight with frightening neurological and psychiatric symptoms the first place we were able to get answers to help Gray was PANDASnetwork.org

PANDAS Network is dedicated to improving the diagnosis and treatment of children with PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections) & PANS (Pediatric Acute-onset Neuropsychiatric Syndrome). Armed with an impressive 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