02/10/2025
"I Believe in the Power of Advocacy to create lasting change through collective of youth and family voices. As legislative lead for National PANDAS/PANS Youth Alliance I am dedicated to raising awareness and pushing for legislative solutions that will improve the lives of children and families affected by PANS/PANDAS nationwide. My advocacy is driven by the need to ensure that those that are overlooked receive the health support they need.โ
~ Saran Tugsjargalโ
Absolutely! We fully support our friend and fellow legislative advocate, Saran, in recognizing the transformative influence of policy. I encourage you to explore Saran's remarkable advocacy work; she has served as a dedicated Advisory Commissioner for Special Education (ACSE) with the California Department of Education since last year. In this role, she has effectively driven significant changes, including her key contribution to the passage of AB2105, which guarantees insurance coverage for PANDAS and PANS. Thank you, Saran, for your exceptional commitment to championing the rights of students with disabilities. Every child deserves equal access to educational opportunities, regardless of their medical challenges.
I urge you to reach out to your California Representatives and advocate for the creation of a California PANS/PANDAS Advisory Council, ensuring that no other students suffer years of lost educational opportunities due to a lack of awareness of PANS/PANDAS. https://findyourrep.legislature.ca.gov/
California State University, Long Beach
Assemblymember Al Muratsuchi Josh Hoover Assemblymember Dawn Addis Assemblymember Mia Bonta Assemblymember Robert Garcia Assemblymember Josh Lowenthal Assemblymember Dr. Darshana Patel Senator Rosilicie Ochoa Bogh Congressman Robert Garcia Adam Schiff Senator Alex Padilla Senator Dave Cortese Senator Lena A. Gonzalez Senator Eloise Gรณmez Reyes
California Department of Education
U.S. Department of Education
โค๏ธ Long Beach California โค๏ธ
02/08/2025
๐ ๐ฎ๐ฑ๐ถ๐๐ผ๐ป ๐๐ฒ๐ฎ๐ป: ๐ ๐ก๐ฎ๐๐ถ๐ผ๐ป๐ฎ๐น ๐ฃ๐๐ก๐ฆ/๐ฃ๐๐ก๐๐๐ฆ ๐ฌ๐ผ๐๐๐ต ๐๐ฑ๐๐ผ๐ฐ๐ฎ๐๐ฒ
I invite you to read Madison's inspiring story. She has shown remarkable courage in the face of uncertainty. Her resilience, paired with the kindness and support of the PANS/PANDAS community, has transformed her into a compassionate advocate. Through her moving words, Madison shares, "I advocate because so many of us are missed. I advocate so that no one has to suffer undiagnosed PANS/PANDAS for as long as I did when effective treatment is available!โ Madison is truly turning her struggles into a meaningful purpose. Thank you, Madison, for your heartfelt advocacy and for transforming your pain into purpose. We are deeply grateful for your compassionate advocacy! ๐
Please contact your California Representatives and urge them to endorse the establishment of a California PANS/PANDAS Advisory Council, ensuring that no child endures years of misdiagnosis. https://findyourrep.legislature.ca.gov/
02/06/2025
Show your โค๏ธ LOVE โค๏ธ for Washington state as they attempt to become the 14th state in the US to expand access to treatment of PANDAS/PANS with House Bill 1741 ๐
Send your photo and heart โค๏ธ to [email protected]
Together, we can move mountains and work towards ensuring all patients with PANDAS/PANS can get the medical treatment they require โ๏ธ
We need a public hearing scheduled in order to move this bill along ASAP โ๏ธ
Time is of the essence for this bill and our children whose childhoods depend on timely access to medical care without delays and denials โฐ
02/06/2025
Support Virginia & Washington PANS/PANDAS!๐ ๐
Glenn Youngkin
Governor Bob Ferguson
๐จ Support HB1641 in Virginia & HB1741 in Washington โ Expanding Access to PANS/PANDAS Care! ๐จ
Children with PANS/PANDAS face debilitating symptoms, yet many families struggle to afford essential treatments due to insurance gaps. These critical bills are advancing efforts to ensure equitable, affordable care.
โ
Why This Matters
These bills set a precedent for affordable, comprehensive care, preventing financial hardship for families and ensuring timely treatment for children in need.
๐ One State at a Time โ Join the Movement!
๐ฉ Contact legislators in VA & WA to support these bills.
๐ข Share this post to spread awareness.
โ๏ธ Advocate for PANS/PANDAS coverage nationwide.
๐ Together, we can make PANS/PANDAS care accessible to all!
02/05/2025
๐ฃ๐๐ก๐ฆ/๐ฃ๐๐ก๐๐๐ฆ UK: ๐ฆ๐๐ฝ๐ฝ๐ผ๐ฟ๐๐ถ๐ป๐ด ๐๐ณ๐ณ๐ฒ๐ฐ๐๐ฒ๐ฑ ๐ฃ๐๐ฝ๐ถ๐น๐
Tina Coope, the educational lead at PANS PANDAS UK, explores the effects of PANS and PANDAS on education and learning. The article highlights that children and adolescents affected by these conditions can unexpectedly exhibit special educational needs (SEND) without any earlier indications. They often face significant challenges in attending school, and these conditions can frequently be misdiagnosed.
Please take a moment to read: ๐
Headteacher Update: https://lnkd.in/gegNjwTu
SecEd: https://lnkd.in/gdCYk2Wy
National Parent Teacher Association California Department of Education AFT California Teachers Association
02/04/2025
This is what we did Sunday morning.
After one of the most difficult years of my life, after falling into deep reflection about the next steps on my path, I find myself here with these incredible people that God has placed in my life.
To each of them, I say THANK YOU. Not only for the goldmine of knowledge they bring to this episode of my podcast titled PANS/PANDAS: First Steps, but also for their hearts and their words of encouragement during my most vulnerable moments of 2024.
Iโm still here, ladies. And as long as God gives me strength, I will keep contributing and taking steps forward in every direction. To heal our children. This episode is in Spanish please share with your Spanish speakers to spread awareness and build bridges of hope EVERYWHERE.
Love you all!
02/04/2025
The ๐ฃ๐๐ก๐ฆ/๐ฃ๐๐ก๐๐๐ฆ Community is renowned for its kindness and generosity. By offering support and assistance to those encountering difficult situations, we foster hope and encourage healing. A heartfelt thank you to the Look. Foundation and James (Jay) Joyce for your compassionate advocacy, and congratulations, James, on this outstanding accomplishment!
โค๏ธ
Huge congratulations to Jay Joyceโa junior at Boston College, Division 1 runner, and dedicated Look. Foundation ambassador & volunteerโfor taking first place in his most recent race! Thank you for representing Look. and the PANS/PANDAS community out on the track. Thank you for shining a light on this important cause and showing everyone what dedication and heart can achieve!
02/04/2025
๐จ๐ฅ๐๐๐ก๐ง ๐๐ง๐ง๐๐ก๐ง๐๐ข๐ก โผ๏ธ
Physicians and families in California are raising concerns about insurance companies denying treatments for children experiencing brain inflammation associated with PANS/PANDAS. This issue persists despite the implementation of Assembly Bill 2105, which mandates coverage for these conditions. The denials are grounded in the December 2024 AAP report, which explicitly states it should not serve as clinical guidelines for PANS/PANDAS. This misinterpretation of the AAP report threatens treatment options for affected children and casts doubt on its credibility, especially since the authors remain anonymous.
Children in California require our support. It is essential to form an advisory council for PANS/PANDAS to ensure that medical decisions are informed by trustworthy evidence and to improve communication between healthcare providers, specialists, educators, and families regarding treatment options and to provide support for families.
I encourage you to discover Cat's inspiring journey. Delve into her heartfelt advocacy for the immediate creation of a California PANS/PANDAS Advisory Council. A resident of San Francisco, Cat's life underwent a significant change due to IVIG treatment. Please explore her remarkable transformation from a patient to compassionate advocate. ๐ฆ
๐๐ผ๐ป๐๐ฎ๐ฐ๐ ๐ฌ๐ผ๐๐ฟ ๐๐ฎ๐น๐ถ๐ณ๐ผ๐ฟ๐ป๐ถ๐ฎ ๐ฅ๐ฒ๐ฝ๐ฟ๐ฒ๐๐ฒ๐ป๐๐ฎ๐๐ถ๐๐ฒ๐ ๐ก๐ผ๐, ๐น๐ฒ๐ ๐๐ต๐ฒ๐บ ๐ธ๐ป๐ผ๐ ๐ผ๐ณ ๐๐ต๐ฒ ๐๐ฟ๐ด๐ฒ๐ป๐ ๐ป๐ฒ๐ฒ๐ฑ ๐ณ๐ผ๐ฟ ๐ฎ ๐ฃ๐๐ก๐ฆ/๐ฃ๐๐ก๐๐๐ฆ ๐๐ฑ๐๐ถ๐๐ผ๐ฟ๐ ๐๐ผ๐๐ป๐ฐ๐ถ๐น: https://findyourrep.legislature.ca.gov/
Assemblymember Corey Jackson
Assemblymember Jacqui Irwin
Josh Hoover
Assemblymember Gregg Hart
Assemblymember John Harabedian
Matt Haney
Assemblymember Mark Gonzalez
Assemblymember Mike A. Gipson, 65th District
Assemblymember Robert Garcia
Assemblyman James Gallagher
Assemblymember Jesse Gabriel
Assemblymember Mike Fong
Assemblyman Heath Flora
Bill Essayli
Assemblymember Sade Elhawary
Diane Dixon
Carl DeMaio
Assemblymember Damon Connolly
Assemblyman Phillip Chen
Assemblymember Jessica Caloza
Assemblymember Lisa Calderon
Isaac Bryan
Assemblymember Mia Bonta
Assemblymember Tasha Boerner
Assemblymember Marc Berman
Assemblymember Steve Bennett
Assemblymember Rebecca Bauer-Kahan
Dr. Jasmeet Bains
Assemblymember Anamarie Avila Farias
Dr. Joaquin Arambula
David Alvarez
Assemblyman Juan Alanis
Assemblymember Patrick Ahrens
Assemblymember Cecilia Aguiar-Curry
Assemblymember Dawn Addis
02/02/2025
๐จ๐ฅ๐๐๐ก๐ง ๐๐ง๐ง๐๐ก๐ง๐๐ข๐กโผ๏ธ
Physicians and families in California are raising concerns about insurance companies denying treatments for children experiencing brain inflammation associated with PANS/PANDAS. This issue persists despite the implementation of Assembly Bill 2105, which mandates coverage for these conditions. The denials are grounded in the December 2024 AAP report, which explicitly states it should not serve as clinical guidelines for PANS/PANDAS. This misinterpretation of the AAP report threatens treatment options for affected children and casts doubt on its credibility, especially since the authors remain anonymous.
Children in California require our support. It is essential to form an advisory council for PANS/PANDAS to ensure that medical decisions are informed by trustworthy evidence and to improve communication between healthcare providers, specialists, educators, and families regarding treatment options and to provide support for families.
I invite you to read about Trent Odom's inspiring story. Learn about his passionate advocacy for the urgent establishment of a California PANS/PANDAS Advisory Council, similar to the one in Texas. Thank you, Trent, for your compassionate and unwavering dedication to patients and families impacted by PANS/PANDAS.
๐๐ผ๐ป๐๐ฎ๐ฐ๐ ๐ฌ๐ผ๐๐ฟ ๐ฅ๐ฒ๐ฝ๐ฟ๐ฒ๐๐ฒ๐ป๐๐ฎ๐๐ถ๐๐ฒ๐ ๐ก๐ผ๐, ๐น๐ฒ๐ ๐๐ต๐ฒ๐บ ๐ธ๐ป๐ผ๐ ๐ผ๐ณ ๐๐ต๐ฒ ๐๐ฟ๐ด๐ฒ๐ป๐ ๐ป๐ฒ๐ฒ๐ฑ ๐ณ๐ผ๐ฟ ๐ฎ ๐๐ฎ๐น๐ถ๐ณ๐ผ๐ฟ๐ป๐ถ๐ฎ ๐ฃ๐๐ก๐ฆ/๐ฃ๐๐ก๐๐๐ฆ ๐๐ฑ๐๐ถ๐๐ผ๐ฟ๐ ๐๐ผ๐๐ป๐ฐ๐ถ๐น:
https://findyourrep.legislature.ca.gov/
Senator Caroline Menjivar Suzette Martinez Valladares
Maria Elena Durazo Senator Susan Rubio
Senator Tim Grayson Senator Shannon Grove
Senator Lena A. Gonzalez Senator Monique Limรณn
Senator Steve Padilla Senator Akilah Weber, MD Scott Wiener
01/28/2025
๐ฃ๐๐ก๐ฆ/๐ฃ๐๐ก๐๐๐ฆ ๐๐๐๐ฆ๐๐:
๐ฃ๐ต๐ฎ๐ฟ๐บ๐ฎ๐ฐ๐ถ๐๐๐โ ๐ฎ๐ฏ๐๐๐ฒ ๐ผ๐ณ ๐ฝ๐ผ๐๐ฒ๐ฟ ๐๐ต๐ฟ๐ฒ๐ฎ๐๐ฒ๐ป๐ ๐ฝ๐ฎ๐๐ถ๐ฒ๐ป๐ ๐ฐ๐ฎ๐ฟ๐ฒ ๐ฎ๐ป๐ฑ ๐ฐ๐ต๐ผ๐ถ๐ฐ๐ฒ:
The article emphasizes a concerning incident where a pharmacist refused to fill a prescription for a child diagnosed with PANS/PANDAS, serious conditions triggered by infections. Timely treatment is essential to prevent complications, which can include brain injury or even death. We must rally to support children with PANS/PANDAS in all aspects: medically, emotionally, academically, and legislatively. No child should be denied access to treatment for a life-changing illness that is manageable.
01/20/2025
Mark you calendars for the 3rd Annual PANS/PANDAS Capitol Hill Advocacy Days, set for April 10th and 11th, 2025! NAPPA has organized a two-day event, and you're welcome to join us for one or both days! Stay tuned for more details and registration informationโ we look forward to seeing you this spring for this vital chance to make our voices heard in Washington, DC!
And be sure to stay for The Alex Manfull Fund 5k on Saturday April 12th. Sign up details here: https://bishopsevents.com/event/2025-the-alex-manfull-fund-5k/
01/20/2025
The Alex Manfull Fund 5K 2025
Please join us April 12th, 2025 for the 3rd Annual TAMF 5K!
01/15/2025
Happy Birthday, Martin Luther King Jr., who was born on January 15, 1929.
On Monday, January 20, 2025, we will commemorate the 30th anniversary of the Dr. Martin Luther King Jr. holiday as a ๐ก๐๐ง๐๐ข๐ก๐๐ ๐๐๐ฌ ๐ข๐ ๐ฆ๐๐ฅ๐ฉ๐๐๐. This meaningful occasion was created to honor Dr. King's life and legacy, inspiring all Americans to participate in volunteer activities and support their communities. What a truly powerful message!
๐โค๏ธ
01/11/2025
๐๐ผ๐ ๐ฐ๐ฎ๐ป ๐๐ฒ ๐ถ๐ป๐ฐ๐ฟ๐ฒ๐ฎ๐๐ฒ ๐ฎ๐๐ฎ๐ฟ๐ฒ๐ป๐ฒ๐๐ ๐ฎ๐ป๐ฑ ๐ฝ๐ฟ๐ผ๐๐ถ๐ฑ๐ฒ ๐๐๐ฝ๐ฝ๐ผ๐ฟ๐ ๐ณ๐ผ๐ฟ ๐๐ผ๐บ๐ฒ๐ป, ๐ฐ๐ต๐ถ๐น๐ฑ๐ฟ๐ฒ๐ป, ๐ฎ๐ป๐ฑ ๐ณ๐ฎ๐บ๐ถ๐น๐ถ๐ฒ๐ ๐ถ๐บ๐ฝ๐ฎ๐ฐ๐๐ฒ๐ฑ ๐ฏ๐ ๐ฃ๐๐ก๐ฆ/๐ฃ๐๐ก๐๐๐ฆ?
The answer lies in partnering with experts. We had the honor of meeting Wendy C. Steinman Nawara, a dedicated advocate for PANS/PANDAS from Illinois, who successfully campaigned for state legislation resulting in Charlie's Law, making Illinois the first state to pass PANS/PANDAS legislation in 2017. She also led the Illinois PANS/PANDAS Advisory Council and today she shared valuable insights for establishing a similar council in California.
Illinois PANS/PANDAS Advisory Council Report:https://www.ilga.gov/reports/ReportsSubmitted/3085RSGAEmail5923RSGAAttachIDPH%20PANDAS%20PANS%20Report%202021.pdf
As part of our mission to bridge medical and mental health services, we had the opportunity to meet with Sharon Roth, the former President of NAMI, who played an active role in the Santa Clara and San Mateo chapters. She generously shared valuable insights and made important connections.
NAMI: https://www.nami.org/
Now is the time to support the creation of a PANS/PANDAS California Advisory Council.
National Alliance on Mental Illness - San Fernando Valley National Pandas/Pans Youth Alliance
01/10/2025
๐ฃ๐๐ก๐ฆ/๐ฃ๐๐ก๐๐๐ฆ ๐๐ถ๐น๐น ๐๐๐๐ข๐ ๐๐ฆ ๐๐๐ช ๐๐ฆ ๐๐๐ฉ๐ข๐๐๐ง๐๐ฆ ๐ก๐ข๐ช ๐ฆ๐๐๐ ๐๐๐ฉ๐๐ฆ๐ข๐ฅ๐ฌ ๐๐ข๐จ๐ก๐๐๐
PLEASE READ: https://beachcomber.news/content/panspandas-bill-becomes-law-advocates-now-seek-advisory-council
A heartfelt thank you goes out to journalist Jon LeSage
from Beachcomber Newspaper in Long Beach, California, for his ongoing support of California's women, children, and families affected by PANS/PANDAS. ๐
Sign Our Petition to Express Support for a PANS/PANDAS Advisory Council: https://chng.it/xqB5bMMkyX
California Democratic Party California Republican Party