A Cause Close to Our Hearts: Kim's Fight for PANS/PANDAS Families

We want to share something today that is incredibly personal to Kim and her family.

Kim and her son, Taite, were recently interviewed by The Boston Globe for an investigative story about the planned closure of Massachusetts General Hospital's pediatric PANS/PANDAS clinic.

READ THE FULL ARTICLE HERE and if you are a Boston Globe Subscriber, click here. 

For Kim, this isn't just another news story. It's something she's spent years fighting for.

When her children were first diagnosed with PANS/PANDAS, Kim became an advocate for families navigating a disease that was often misunderstood and difficult to get treatment for. She went on to found the New England PANS Association, working to raise awareness, connect families, and fight for better access to care.

Last year, when Taite experienced a relapse, the MGH clinic was there to help him get the treatment he needed.

Now, with the clinic expected to close on January 1, 2027, Kim is deeply concerned about what happens to the children and families who rely on its specialized care.

After years of fighting for recognition, resources, and treatment options, the thought of families losing access to this clinic is heartbreaking.

And today, Kim is asking for your help.

Please take a few minutes to read The Boston Globe article and consider contacting the Massachusetts Attorney General's office to express your concern about the closure and its potential impact on families receiving care.

Massachusetts Attorney General's Office
 (617) 727-8400

Not sure what to say? Here's a suggested script:

"I'm calling to express my concern about the planned January 1, 2027 closure of the pediatric PANS/PANDAS program at Mass General Brigham for Children.

I'm concerned that families may be left without adequate continuity of care or access to specialized treatments, including IVIG.

I'd like to file a formal complaint and request that the Attorney General's office review the potential impact on patient care, healthcare access, and insurance coverage."

You don't need to have a personal connection to PANS/PANDAS to understand how important it is for children to have access to the medical care they need.

We also encourage you to follow the @Look.Foundation to learn more about PANS/PANDAS and stay informed about the ongoing efforts to protect access to care.

Kim has spent years advocating for these families. Now, we're hoping our community can help make their voices a little louder.

Thank you for reading, sharing, and supporting something that means so much to the RPS family.