Hunter Syndrome Awareness Week

[Jennifer Chandler]

 Dear Commissioners,

I hope this message finds you well. I’m writing to respectfully request your support in formally recognizing the third week of October as Hunter Syndrome Awareness Week through a local resolution. 

Hunter syndrome (Mucopolysaccharidosis Type II or MPS II) is a rare and life-limiting genetic disorder that affects approximately 1 in 100,000 to 170,000 live male births. Families like mine, who live with the reality of this diagnosis every day, are fighting not only for our children's lives, but for increased awareness, earlier diagnoses, and access to research and treatment options.

Recognizing Hunter Syndrome Awareness Week in Orange County would be especially meaningful to the Hunter Syndrome and MPS communities because the world-renowned Muenzer MPS Center is located in Orange County. My family moved to Hillsborough so my son could receive care at the Muenzer MPS Center.

Attached, you’ll find a proposed resolution that outlines the importance of this designation. By formally recognizing Hunter Syndrome Awareness Week, your office would help shine a light on the critical needs of this often-overlooked community, while honoring the strength and resilience of those affected. 

We would be honored to work with your team on this effort and would love the opportunity to discuss this further if you’re open to it. Thank you so much for your consideration and continued service. 

Pictured below: My son Atlas, a 4 year old with Hunter syndrome living in Hillsborough.

[Jennifer Neuerburg]

Hello Commissioners,

I am following up on my previous email. I would love the opportunity to discuss implementing Hunter Syndrome Awareness Week in Orange County if you are open to it.

Thank you in advance for your time.

Best,

Jennifer C. Neuerburg

Sent from my iPhone

[Jean Hamilton]

Dear Jennifer C. Neuerburg,

On behalf of the Orange County Board of Commissioners (BOCC) thank you for sharing information about Hunter Syndrome. I will consider this request for a resolution using the BOCC's usual procedure and get back to you after Labor Day.

Sincerely,

Jean

Jean Hamilton, Chair

Orange County Board of Commissioners

 

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From: Jennifer Neuerburg <jennifer....@gmail.com>
Sent: Thursday, August 27, 2026 9:54 AM
To: ALL_BOCC_MANAGER_CLERK <OCB...@orangecountync.gov>
Subject: Fwd: Hunter Syndrome Awareness Week

 

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[Jennifer Neuerburg]

Thank you very much. Have a nice weekend.

Best,

Jennifer C. Neuerburg