Michael’s Story

Site created on February 20, 2019

Welcome to our CaringBridge website. We are using it to keep family and friends updated in one place. We appreciate your support and words of encouragement. Please note that donations given on the Tributes tab go to CaringBridge so that they can provide this service to families like ours. Tributes do not come to the family. We are not soliciting donations at this time.

In late 2018, Michael was diagnosed with a prion disease. Initially thought to be Creutzfeldt-Jakob disease, a rare degenerative, fatal brain disorder. genetic testing confirmed that it is an even rarer prion disease called Gerstmann–Sträussler–Scheinker syndrome. This disease has a similar presentation and prognosis to CJD and the expectation is that this disease will prove fatal within the year. 

Michael started experiencing a lack of coordination and muscle weakness in July 2018 and was diagnosed in December 2018. Further details were confirmed in February 2019.



Newest Update

Journal entry by Elizabeth Bologna

Dear NY CJD Support Group members, would you be willing to reach out to your Representative’s office about the upcoming House Appropriations Markup of the HHS budget?  The President’s Budget eliminated prion funding (no funding at CDC, no funding at NPDPSC, no funding for autopsy program) – we must encourage the House to restore and increase the funding before April 30.

 

If you are in the district of CT Rosa DeLauro who is chairwoman of Appropriations HHS Subcommittee or NY Nita Lowey, chair of overall Appropriations, it would be so helpful to have communications directly from a constituent!  Please also ask your friends and family who are in her district to contact her office by email or phone (there’s not enough time for a mailed letter).  If you are in a different district, your instructions are highlighted below in yellow.

 

Following is our brief template for your email.  Thank you for reaching out to the office for a contact name/email and for forwarding our below language along with the attached Written Testimony. 

 

Thanks, Debbie

 

**************

 

Dear Families, please reach out to your contact in your Congressperson’s office.  The President’s recommended budget has eliminated all funding for “Prion Surveillance” under “CDC, Emerging and Zoonotic Diseases.”  That would mean the complete elimination of prion surveillance programs at the CDC and the National Prion Disease Pathology Surveillance Center.

 

The House Appropriation’s HHS (Health and Human Services) Subcommittee has a budget markup session scheduled for April 30 to determine what will be included in the FY2020 budget.  It is imperative that they understand the need to continue funding Prion Disease Surveillance. 

 

For everyone: Please email or call your contact in your Congressperson’s office immediately with the following message (and attach the written testimony document):

 

Include your address (so they’ll know you’re a constituent) and mention your story with CJD.  You can use the following language, and include the attached Written testimony.

 

“We urge you contact the Appropriations LHHS Subcommittee and ask them to restore the $6 million appropriation not included in the Administration’s budget for Prion Disease Surveillance and increase funding by an additional $2 million to address emerging Prion Disease threats including studies to determine whether Chronic Wasting Disease can transmit to humans. 

 

“More information is provided in the attached written testimony that was submitted by the CJD Foundation to the House Appropriations committee.” 

 

How to Contact Your Representative’s Office:

If you don’t have contact information, contact the office and ask for the email address of the aide who handles health and human services appropriations for the office (if at all possible, avoid mailing or sending through the senator/rep’s website).  Here’s how to identify your Senators/Congressperson:  http://www.senate.gov/states/ and https://www.house.gov/representatives/find-your-representative

 

If your Representative is Chair or Ranking Member of Appropriations Committee:

Nita Lowey NY-17

Kay Granger TX-12

 

Ask for their support for  $8 million line item appropriation ($6 million is to maintain current funding levels and $2 million to address emerging threats) for Prion Disease Surveillance under CDC, Emerging and Zoonotic Diseases in  Subcommittee markup and eventual committee action. 

 

If your Representative is a member of the Appropriations Committee (particularly the LHHS Subcommittee of the Appropriations committee whose members are listed below) or if you have friends or family in these districts, please ask them to reach out:

 

CT- 03 Rosa DeLauro, Chairwoman

CA-40 Lucille Roybal-Allard

CA-13 Barbara Lee

WI-02 Mark Pocan

MA-05 Katherine Clark

FL-21 Lois Frankel

IL-17 Cheri Bustos

NJ-12 Bonnie Watson Coleman

OK-04 Tom Cole, Ranking Member

MD-01 Andy Harris

WA-03 Jaime Herrera Beutler

MI-04 John Moolenaar

GA-14 Tom Graves

 

Urge them to support $8 million line item appropriation ($6 million is to maintain current funding levels and $2 million to address emerging threats) for Prion Disease Surveillance under CDC, Emerging and Zoonotic Diseases.

 

If your Representative is NOT a Member of Appropriations Committee or Subcommittee:

 

Ask them to contact a member of Appropriations LHHS Subcommittee or leadership and encourage them to support $8 million line item appropriation ($6 million is to maintain current funding levels and $2 million to address emerging threats) for Prion Disease Surveillance under CDC, Emerging and Zoonotic Diseases.

 

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