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WE HAVE A DONOR CHALLENGE ~ Gifts of any size doub

WE HAVE A DONOR CHALLENGE ~ Gifts of any size doubled up to total of $5000! $25 = $50!

Link to TAMF website in the bio. Direct link here:
https://thealexmanfullfund.org/donate-to-tamf/

Please share!
Thank you!
xo

#givingtuesday
#pandaspans
#panspandas
#thealexmanfullfund

On #GivingTuesday, please remember The Alex Manful

On #GivingTuesday, please remember The Alex Manfull Fund. We are very grateful to those who have already given. ❤️

LINK TO GIVE: https://secure.lglforms.com/form_engine/s/eK3YR0sju9eaosdrASonXg 🙏🏽

LINK TO SEE our accomplishments:
https://thealexmanfullfund.org/2024-impact-summary/ 💪

Advancing Access to Care for PANDAS/PANS ~ Today

Advancing Access to Care for PANDAS/PANS ~

Today, I had the privilege of meeting with Warris Bokhari, MD, CEO of Claimable and Daniela Sosa-Sarkar, PsyD, President of The Alex Manfull Fund (TAMF) to learn about Claimable’s mission to assist PANDAS/PANS families in accessing IVIG treatments through support with denial appeals.

At TAMF, we are deeply committed to advancing research, clinical education, and awareness of PANDAS/PANS. Above all, we believe in equitable care for all families, ensuring no one is left behind due to financial or insurance barriers. Expanding access to treatments like IVIG is crucial not only for helping patients today but also for providing critical data to advance research and improve clinician education, ensuring more effective care in the future.

Eventually, we all believe that the “insurance system”will provide coverage without this dance around denials, and practitioners will be less reluctant to accept individuals with PANDAS and PANS.

By working together, we are making important strides toward a future where every family can access the care they need, regardless of their circumstances.

Check out www.getclaimable.com . The service is gratis right now for PANDAS/PANS patients. Check it out! Check it out!

Bravo, Dr Warris Bokhari for acting from your heart.

#claimable
#panspandas
#pandaspans
#insurance
#thealexmanfullfund
#PANDAS #PANS #AccessToCare #EquitableCare #ResearchMatters

Michal “Mikki” Tal, PhD is an immunoengineer a

Michal “Mikki” Tal, PhD is an immunoengineer and a principal scientist at MIT — at the Tal Research Group and she is the associate scientific director at the Center for Gynepathology Research, also at MIT. Dr Tal is working to map the trajectory of the immune response to infection in a clinical study called MAESTRO. Fascinating!

Dr Tal asks questions like:
*Why doesn’t everyone bounce back from infection?
*Why do infections skew female?
*Why don’t researchers look at antibody subclasses like IGG2 in Lyme?

We were fortunate to have Dr Tal speak at The Alex Manfull Fund 2024 PANDAS/PANS Symposium — she left everyone thinking.🤔

#talresearchgroup
#mit
#immunesystem
#tamfsymposium2024
#dialoguesaveslives
#thealexmanfullfund

From its initial conceptualization in 2018, The Al

From its initial conceptualization in 2018, The Alex Manfull Fund (TAMF) recognized that young adults comprised a segment of PANDAS/PANS population that was not receiving enough (any?) attention in clinical practice or in research.

PANDAS was generally seen solely as a pediatric disorder even though Dr Sue Swedo, who is credited with first identifying the disorder, said that it could occur in adolescence and young adulthood but was not as likely to occur then..

For our daughter, PANDAS symptoms first surfaced at age 19 after a bout of strep. Our mission included, from its initial inception, a “special emphasis on young adults.”

At our recent PANDAS/PANS Symposium ( November 2, 2024), we were very fortunate to include a panel of three young adults, previously diagnosed with PANDAS/PANS who shared their stories with attendees. The very personal discussion was moderated by Daniela Sosa-Sarkar, PsyD, TAMF Board President. It was incredibly moving and informative and showed that PANDAS does indeed affect adolescents and young adults.

CLICK ON THE VIDEO LINK In the bio to get a glimpse of the discussion. For privacy purposes, only two participants are shown. We are incredibly grateful to all three participants.

#pans
#pandaspans
#youngadultswithpans
#tamfsymposium2024
#dialoguesaveslives
#missingacmanfull

Today, when we gather ‘round the table to count

Today, when we gather ‘round the table to count our blessings, you are among those we are grateful for — we thank you for choosing The Alex Manfull Fund as one of the organizations that works with you.

Happy Thanksgiving to those at every table, near and far, and ethereal.

#thealexmanfullfund
#thanksgiving2024
#missingacmanfull

TAMF’s latest Podcast, Untangling PANDAS & PANS,

TAMF’s latest Podcast, Untangling PANDAS & PANS, is out!

I had the pleasure of catching up with Pawel Kiela, DVM, PhD after his presentation at The 2024 Alex Manfull Fund PANDAS/PANS Symposium.

Dr Kiela, professor and scientist at the University of Arizona who specializes in autoimmune and autoinflammatory diseases, talks with me about “Gut Microbiome, Microglia, and PANDAS.”

Our conversation highlights the importance of an interdisciplinary approach to understanding what may contribute to causing, perpetuating, and eventually treating PANDAS and PANS.

Thank you to Dr Kiela for taking the time to talk with me on Untangling PANDAS & PANS — and for your excellent presentation at TAMF’s recent symposium. (Actually Dr Kiela has presented at all three TAMF symposia!)

Find this podcast wherever you get your favorite podcasts and by clicking on the link in the bio.

#thealexmanfullfund
#pandaspans
#panspandas
#untanglingpandasandpans
#podcast
#gutmicrobiome
#microglia
#steelechildrensresearchcenter
#tamfsymposium2024
#dialoguesaveslives

Reminding all those who attended TAMF’s PANDAS/P

Reminding all those who attended TAMF’s PANDAS/PANS Symposium on Nov 2 and signed up to receive information about getting CMEs: you should have received information about beginning that process. Don’t forget to follow through!

The video recorded sessions will be available soon!

#tamfsymposium2024
#pandaspans

This article does an excellent job of looking at t

This article does an excellent job of looking at the big picture of Infection-Associated Chronic Conditions (IACCs), specifically “how studies of Long Covid and other IACCs might inform one another.” That includes PANDAS/PANS.

“The field is moving rapidly, with studies posted or published on a near-weekly basis. Still, new funding opportunities and investment in clinical infrastructure to provide care to patients are limited. Industry engagement also remains limited and will likely remain so until progress on defining the mechanism is made. Progress in the management of HIV was only made because of a sustained, decades-long, commitment by the NIH and others.”

“More importantly, the scientific community now has far more tools at its disposal, some that could not even have been imagined 40 years ago. Using these tools to study the full spectrum of IACCs should clear away the web of disbelief and denial, identify those objective measures, and finally provide the knowledge that can lead to beneficial treatments for long-suffering people with IACCs.”

Thanks @christine.metzner.nh for the heads up!

LINK: https://www.science.org/doi/10.1126/scitranslmed.ado2101

#panspandas
#iacc
#longcovid
#mechronicfatigue
#pandaspans
#thealexmanfullfund

News from The 2024 Alex Manfull Fund Symposium on

News from The 2024 Alex Manfull Fund Symposium on Infection-Associated Neuroimmune Psychiatric Disorders —

Herb Lachman, MD is a member of four departments at Albert Einstein College of Medicine in New York City: Psychiatry and Behavioral Sciences, Medicine,
Genetics, and Neuroscience Sciences. He is also a member of EXPAND, The European Immuno-neuropsychiatric Association.

Dr Lachman is well known and highly respected in the PANS community for his work in genetics. He spoke about his very recently published genetics research detailed in a paper co-authored with Janet Cunningham et al. (2024). (This is a follow up to earlier work, presented at the 2022 TAMF symposium.)

Mutations in DNA Damage Repair Genes were identified in 17 patients with “acute-onset of psychiatric symptoms an/or regression that their clinicians identified as PANS or another inflammatory brain condition.”

Understanding genetics research does not come naturally to me, I confess, but I am dedicated to understanding this paper. (It is very readable!)

Dr Lachman’s talk identified several conclusions and observations:

“PANS susceptibility is genetically heterogeneous.”

“Mutations in genes that regulate innate immunity and inflammasome signaling lead to acute neuropsychiatric decompensation in a subgroup of PANS and regression in ASD following infectious or non-infectious triggers.

“Mutations in DNA repair genes are also found in OCD and Down Syndrome Regression Disorder.”

“The innate immune pathways affected by these genes are potentially druggable.”

The video recordings will be posted soon. In the meantime, here is the link to the recently published article.

#panspandas
#tamfsymposium2024
#dialoguesaveslives
#genetics
#pansresearch

I was privileged to be able to welcome attendees o

I was privileged to be able to welcome attendees of The Alex Manfull Fund PANDAS/PANS Symposium on Saturday, November 2.

Researchers and clinicians came from across the country and from Europe to share their expertise about this horrific neuroimmune disorder that manifests mainly with psychiatric sequelae but actually affects many other systems in the body. It is a multidisciplinary disorder.

I looked out at the filled-to-capacity room and saw, represented in the many faces in the audience, all the requisite disciplines to advance understanding of the pathophysiological mechanisms of PANDAS/PANS and to lay the foundation for better treatments to be developed. (Dare I say prevention?)

In our audience were psychiatrists, neurologists, rheumatologists, infectious disease doctors, immunologists, pediatricians, gastroenterologists, psychologists, psychiatric nurses, epidemiologists, neuropathologists, basic scientists conducting research on the role of genetics, the blood brain barrier, microbiome, microglia, cytokines, vector-borne disease, long COVID, and other professionals from different fields of medicine such as cancer and MS.

In that room, we had an extraordinary multidisciplinary group to advance understanding and treatment of PANDAS/PANS and other infection-associated neuroimmune disorders.

I also saw advocacy groups — EXPAND, Aspire, Look.Foundation, The Louisa Adelynn Johnson Foundation, NAPPA, VA4PA — that, along with others not present, want to be the wind beneath the wings of this progress.

We can do this!

I will highlight the main points of each presentation over the next couple of weeks. In the meantime, I’ve included a sneak preview of TAMF’s 2024 symposium, ”Dialogue Saves Lives.” (Click on link in bio.)

@topfans #azonefordialogue #tamfsymposium2024 #thealexmanfullfund #pandaspans #tamfsymposium2024

Behind the scenes at The Alex Manfull Fund PANDAS/

Behind the scenes at The Alex Manfull Fund PANDAS/PANS Symposium last Saturday in Portsmouth, NH were the volunteers who made sure that every little thing worked. Some arrived early, some stayed late, and some are still working — such as Carl Rutman who, for three years, has volunteered to video record the talks so that those who could not attend can still see the sessions. Several others, like Carl, were too busy volunteering to capture on film. We are immensely grateful to each of you.

We were honored to have so many members of the Sci

We were honored to have so many members of the Scientific and Medical Advisory Board of Europe’s premiere Advocacy Organization EXPAND in attendance and speaking.

It is critically important to encourage dialogue and communication among researchers and practitioners.

#panspandas
#thealexmanfullfund
#tamfsymposium2024
#dialoguesaveslives

Alex’s long-time friends, Sarah and Kathleen ser

Alex’s long-time friends, Sarah and Kathleen served the wine, donated in large part by Acquiesce Winery in Lodi, California.

#tamfsymposium2024
#panspandas
#tamfsymposium2024
#dialoguesaveslives
#acquiescewinery

@woomsx_p7pwggxz

The 2024 Symposium began with a Reception at Ports

The 2024 Symposium began with a Reception at Portsmouth’s Strawbery Banke Museum to welcome our esteemed speakers.

“Dialogue Saves Lives” was our theme and, as you can see in this series of photographs, there was a lot of dialogue!

#panspandas
#dialoguesaveslives
#tamfsymposium2024
#thealexmanfullfund

Scenes from The Alex Manfull Fund Reception for ou

Scenes from The Alex Manfull Fund Reception for our 2024 PANDAS/PANS Symposium in Portsmouth, NH.

#panspandas
#dialoguesaveslives
#tamfsymposium2024

And so, The Alex Manfull Fund Reception to welcome

And so, The Alex Manfull Fund Reception to welcome our PANDAS/PANS symposium speakers began. Some of the best and the brightest from across the US and Europe gathered last Friday, November 1st in Portsmouth to begin to #dialogue.

Scenes from the 2024 TAMF Reception where the warmth and excitement were palpable.

#dialoguesaveslives
#panspandas
#tamfsymposium2024
#thealexmanfullfund

Meet our new VP — Angie Gentile!This is a positi

Meet our new VP — Angie Gentile!This is a position we had not filled until now — we are absolutely thrilled to welcome Angie who brings a wealth of experience in a variety of areas, especially communications and strategic planning, to our board. Actually, as a volunteer for our organization for over a year, Angie has already shared her various skills with us. She writes a great press release.

To read more about our expanding board, read the press release in the bio!

#panspandas
#thealexmanfullfund
#expandingourboard
#va4pa

Getting things ready for the big day. The Alex Man

Getting things ready for the big day. The Alex Manfull Fund PANDAS/PANS Symposium on Saturday, November 2. (Filled to capacity.)

#panspandas
#tamfsymposium2024
#thealexmanfullfund

It is very exciting to announce that The Alex Manf

It is very exciting to announce that The Alex Manfull Fund is growing and expanding. Meet our new President: Daniela Sosa-Sarkar, PsyD, who came onboard in 2023, and now moves to the helm with a great knowledge base in this area and tremendous enthusiasm that will propel our initiatives forward.

Read about these changes in today’s press release (link in bio).

#tamfboardofdirectors
#thealexmanfullfund
#panspandas
#pandaspans

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