Oooh, what a morning! On June 3, 2023, 210 people — runners, walkers, trotters, and strollers — were off along the Potomac River in our inaugural 5K to support TAMF and our awareness, education, and research efforts to fight neuroimmune disorders such as PANDAS and PANS.
The Alex Manfull Fund recognizes the mental health crisis plaguing our nation’s youth and seeks to raise awareness, advance education of medical providers, and support more research to understand the role that infection and the immune system play in psychiatric disorders. Referred to by various names — post-infectious neuroimmune disorders, PANDAS, PANS, Autoimmune Encephalitis — these disorders look like mental illness but have a different cause and require different types of treatment to provide effective results and lasting recovery. These disorders, initially thought to only impact the pediatric population, are clearly also affecting adolescents and young adults at alarming rates and yet are very responsive to treatment when identified early. Had Alex received early diagnosis and appropriate treatment for PANDAS, she would be with us today.
Huge thank-yous to: DonorUp for building the platform that enabled our fundraising to be so successful; Bishops Events for planning and executing such an exceptionally well-organized 5K; RunWell Clinic for warming up the runners; 16 Hoops for capturing it all in photos; Ellie Forman and team for capturing it all in video; David Scott Allen for designing the awesome logo; and everyone — near and far — who participated with such spirit!
The second annual TAMF 5K run/walk will be held on Saturday, April 13, 2024. Mark your calendar!
Kayla Caulfield
Kayla Caulfield singing the National Anthem
Kayla Caulfield, “CODA” actress who has personally experienced PANDAS/PANS, sang the National Anthem (beautifully). Now, when not acting or singing, Kayla is advocating for greater awareness, education, and funding for these neuroimmune disorders…and doing an awesome job.
Lucas Murdock
Lucas Murdock giving his talk to the participants of the TAMF 5K
Lucas Murdock was 10 years old when he first testified before the Maryland House and Government Operations Committee, urging them to pass legislation to require insurance coverage to cover doctor-prescribed treatment for PANDAS and PANS. (It passed!) Lucas knows full well what it is like to suffer from PANDAS/PANS. At the TAMF 5K, he spoke to the group of about 200 people, telling them how critically important it is for health care providers to learn about these disorders so that they can recognize these disorders, accurately diagnose them, and properly treat them as early as possible for a favorable diagnosis. Read his talk (below) to find out how many different doctors he saw before being diagnosed and effectively treated. He is a great advocate and an impressive young man.
Transcript of Lucas Murdock’s talk
There is always hope. No matter how dismal things appear, no matter how many challenges we face, or the setbacks we suffer, hope is always there. And hope is the thing the keeps us going. It gives us a sense of purpose. Not only is it the desire for good things but also the desire to make good things happen despite the many obstacles along the way.
And hope, among so many other emotions, is what pulled me through this terrible disease of PANDAS-Pediatric Autoimmune Neuropsychiatric Disorder Associated with Strep.
Hi. My name is Lucas Murdock and I am now 14 years old. I had dreams about my future, but my dreams all changed due to my illness. See, for three years I saw 14 different doctors and was medicated on max doses of many different psychiatric medications. None of which I ever needed.
I actually was a severe case of PANDAS. But no one knew.
My parents never knew about PANDAS and the doctors I had seen, never believed.
After my parents learned about PANDAS from a friend, at the age of 8, they took me to the doctor’s office and begged for a strep test. The doctor was reluctant because I did not have typical symptoms of strep and even said, “I doubt he will be positive.” Low and behold I had a positive strep test and on October 10, 2018, I was finally diagnosed with PANDAS and pulled off all psych meds.
From that day on, my hope to get better became my family’s mission.
Finding doctors was a struggle for my parents. No one believed. No one wanted to treat. Doctor after doctor, miles after miles, we finally found my amazing team. My doctors treated me aggressively and were there for me every moment I needed them.
With my doctors, the hope in my heart to heal grew larger and larger. With long term antibiotics, numerous other treatments, 21 high dose IVIG infusions, multiple blood draws, insurance company battles and wins, I have not had any PANDAS treatment since October 2020. I have been symptom free and completely recovered.
I want to stand here today to give everyone hope that you can find healing and recovery for this serious disease.
But we need each other to do this, and that is why we are all here today.
My continued hope is that we have earlier detection so kids can heal quickly and not miss out on their dreams, like I did.
We need doctors to treat, believe, and understand this debilitating disease.
We need to stand together and continue our advocacy efforts to put pressure on doctors, insurance companies, and law makers.
And actually, all of this is happening right now because of The Alex Manfull Fund 5K.
I am so thankful for The Alex Manfull Fund because of their strong advocacy, determination, and desire to bring awareness so that practitioners and parents will be familiar with PANDAS/PANS. This event is raising funds to continue educating physicians, mental health practitioners, educators, and others about how to recognize and treat cases and support research.
In conclusion, please never give up hope. I am a prime example of what can happen with proper diagnosis and aggressive treatments. Persist to help kids continue their hopes and dreams to fully recover by advocating, educating, and sharing your story to doctors, lawmakers, and educators. And remember, all this hope happens with your continued support and donations to The Alex Manfull Fund, knowing their efforts are working and their advocacy is helping so many kids.
I am very honored to be here today. Thank you for listening and let’s have a great time running the 5K in Alex’s memory.
Are you interested in becoming a sponsor of 2024 The Alex Manfull Fund 5K Run/Walk? If so, please click on the button below to see the exciting options available for your organization :
TAMF 5K Washington, DC (June 3, 2023)
Oooh, what a morning! On June 3, 2023, 210 people — runners, walkers, trotters, and strollers — were off along the Potomac River in our inaugural 5K to support TAMF and our awareness, education, and research efforts to fight neuroimmune disorders such as PANDAS and PANS.
The Alex Manfull Fund recognizes the mental health crisis plaguing our nation’s youth and seeks to raise awareness, advance education of medical providers, and support more research to understand the role that infection and the immune system play in psychiatric disorders. Referred to by various names — post-infectious neuroimmune disorders, PANDAS, PANS, Autoimmune Encephalitis — these disorders look like mental illness but have a different cause and require different types of treatment to provide effective results and lasting recovery. These disorders, initially thought to only impact the pediatric population, are clearly also affecting adolescents and young adults at alarming rates and yet are very responsive to treatment when identified early. Had Alex received early diagnosis and appropriate treatment for PANDAS, she would be with us today.
Huge thank-yous to: DonorUp for building the platform that enabled our fundraising to be so successful; Bishops Events for planning and executing such an exceptionally well-organized 5K; RunWell Clinic for warming up the runners; 16 Hoops for capturing it all in photos; Ellie Forman and team for capturing it all in video; David Scott Allen for designing the awesome logo; and everyone — near and far — who participated with such spirit!
The second annual TAMF 5K run/walk will be held on Saturday, April 13, 2024. Mark your calendar!
Kayla Caulfield
Kayla Caulfield, “CODA” actress who has personally experienced PANDAS/PANS, sang the National Anthem (beautifully). Now, when not acting or singing, Kayla is advocating for greater awareness, education, and funding for these neuroimmune disorders…and doing an awesome job.
Lucas Murdock
Lucas Murdock was 10 years old when he first testified before the Maryland House and Government Operations Committee, urging them to pass legislation to require insurance coverage to cover doctor-prescribed treatment for PANDAS and PANS. (It passed!) Lucas knows full well what it is like to suffer from PANDAS/PANS. At the TAMF 5K, he spoke to the group of about 200 people, telling them how critically important it is for health care providers to learn about these disorders so that they can recognize these disorders, accurately diagnose them, and properly treat them as early as possible for a favorable diagnosis. Read his talk (below) to find out how many different doctors he saw before being diagnosed and effectively treated. He is a great advocate and an impressive young man.
Transcript of Lucas Murdock’s talk
There is always hope. No matter how dismal things appear, no matter how many challenges we face, or the setbacks we suffer, hope is always there. And hope is the thing the keeps us going. It gives us a sense of purpose. Not only is it the desire for good things but also the desire to make good things happen despite the many obstacles along the way.
And hope, among so many other emotions, is what pulled me through this terrible disease of PANDAS-Pediatric Autoimmune Neuropsychiatric Disorder Associated with Strep.
Hi. My name is Lucas Murdock and I am now 14 years old. I had dreams about my future, but my dreams all changed due to my illness. See, for three years I saw 14 different doctors and was medicated on max doses of many different psychiatric medications. None of which I ever needed.
I actually was a severe case of PANDAS. But no one knew.
My parents never knew about PANDAS and the doctors I had seen, never believed.
After my parents learned about PANDAS from a friend, at the age of 8, they took me to the doctor’s office and begged for a strep test. The doctor was reluctant because I did not have typical symptoms of strep and even said, “I doubt he will be positive.” Low and behold I had a positive strep test and on October 10, 2018, I was finally diagnosed with PANDAS and pulled off all psych meds.
From that day on, my hope to get better became my family’s mission.
Finding doctors was a struggle for my parents. No one believed. No one wanted to treat. Doctor after doctor, miles after miles, we finally found my amazing team. My doctors treated me aggressively and were there for me every moment I needed them.
With my doctors, the hope in my heart to heal grew larger and larger. With long term antibiotics, numerous other treatments, 21 high dose IVIG infusions, multiple blood draws, insurance company battles and wins, I have not had any PANDAS treatment since October 2020. I have been symptom free and completely recovered.
I want to stand here today to give everyone hope that you can find healing and recovery for this serious disease.
But we need each other to do this, and that is why we are all here today.
My continued hope is that we have earlier detection so kids can heal quickly and not miss out on their dreams, like I did.
We need doctors to treat, believe, and understand this debilitating disease.
We need to stand together and continue our advocacy efforts to put pressure on doctors, insurance companies, and law makers.
And actually, all of this is happening right now because of The Alex Manfull Fund 5K.
I am so thankful for The Alex Manfull Fund because of their strong advocacy, determination, and desire to bring awareness so that practitioners and parents will be familiar with PANDAS/PANS. This event is raising funds to continue educating physicians, mental health practitioners, educators, and others about how to recognize and treat cases and support research.
In conclusion, please never give up hope. I am a prime example of what can happen with proper diagnosis and aggressive treatments. Persist to help kids continue their hopes and dreams to fully recover by advocating, educating, and sharing your story to doctors, lawmakers, and educators. And remember, all this hope happens with your continued support and donations to The Alex Manfull Fund, knowing their efforts are working and their advocacy is helping so many kids.
I am very honored to be here today. Thank you for listening and let’s have a great time running the 5K in Alex’s memory.
A Big Thank You to our Sponsors:
An Anonymous Donor
Are you interested in becoming a sponsor of 2024 The Alex Manfull Fund 5K Run/Walk? If so, please click on the button below to see the exciting options available for your organization :