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- Supporting Families Affected by Prion Disease
Several times each year, the CJD Foundation visits Capitol Hill to ensure legislators remain cognizant of the impact of CJD in their districts, and what they can do to support surveillance and research.
The CJD Foundation arranges appointments for family members with their senators and representatives so they can share how prion disease has impacted their family. Through these meetings, families educate their representatives about CJD and urge them to continue funding the CDC program that supports CJD surveillance.
On November 10, Representative David Valadao (R-CA-22) introduced a bipartisan resolution supporting the goals and ideals of Creutzfeldt-Jakob Disease Awareness Day in the House of Representatives. On November 12, Senator Jon Husted (R-OH) introduced a resolution supporting the goals and ideals of Creutzfeldt-Jakob Disease Awareness Day in the U.S. Senate. This marks the first time there have been CJD resolutions introduced in both the House and Senate.
Creutzfeldt-Jakob Disease (CJD), is a rare, 100% fatal, degenerative brain disease that causes rapidly progressive dementia. These resolutions are an important step to recognizing the importance of raising awareness of this rare brain disorder.
“These resolutions shine a light on the families who have lost loved ones to Creutzfeldt-Jakob Disease and those who continue to advocate for answers,” said Debbie Yobs, President and Executive Director of the CJD Foundation. “By raising national awareness, Congress is helping to strengthen the support for CJD patients, families, and researchers working to end this tragic disease. We are deeply grateful to Representative Valadao and Senator Husted and their Congressional colleagues for recognizing the urgency of this rare and devastating condition.”
Rep. Valadao was joined in this effort by Representatives Aaron Bean (FL-4), Shontel M. Brown (OH-11), Julia Brownley (CA-26), Vern Buchanan (FL-16), Jim Costa (CA-21), Vince Fong (CA-20), David P. Joyce (OH-14), Jerrold Nadler (NY-12), Eric Swalwell (CA-14), and Paul Tonko (NY-20).
You may find a link to the House resolution here and the Senate resolution here.
This funding is critical to monitor cases of Creutzfeldt-Jakob Disease (CJD). In addition, we need the Senate’s support to encourage the NIH to designate prion disease as one of the “Alzheimer’s Disease Related Dementias (ADRDs).”
I’m Shannon and I currently reside in Jacksonville, Florida. My husband Chuck was a 28-year U.S. Navy Senior Chief and submariner whose life was taken far too quickly by familial (genetic) Creutzfeldt-Jakob Disease in November 2022. His mother had also passed from this same disease, making our family’s loss tragically generational.
I attended CJD Advocacy Day for the first time in 2023 to give Chuck a voice and to help change what other families experience when facing this devastating diagnosis. The training we received was helpful, the meetings were seamlessly organized, and being in Washington, D.C. with other CJD families was both empowering and healing.
Because of my work in advocacy, my local Congressman, Aaron Bean, supported the bipartisan House resolution recognizing November 12 as National CJD Awareness Day, two years in a row, bringing national attention to the importance of continued prion disease surveillance, research, and education.
Chuck served our country for nearly three decades. Through advocacy, I continue that service — for him, and for every family who deserves answers, awareness, and hope.
This is how awareness becomes action.
This is how families are heard.
This is how we honor them.
This is how we protect others.
This is how change begins.
Wear a CJD awareness bracelet or Strides for CJD T-shirt on key dates, such as Rare Disease Day (Feb. 28), Advocacy Day (March), Strides for CJD (October), and International CJD Awareness Day (Nov. 12)
Wear a CJD awareness bracelet or Strides for CJD T-shirt on key dates, such as Rare Disease Day (Feb. 28), Advocacy Day (March), Strides for CJD (October), and International CJD Awareness Day (Nov. 12)
