It is with great pleasure that I announce the appointment of Deana Simpson to join me as co-chair of the CJD International Support Alliance (CJDISA).
Deana is the representative for ‘CJD Insight’ which like the CJDSGN and the CJD Foundation USA, is a founding member organization of the CJD International Support Alliance which began in 2006. The CJDISA now consists of 11 member organizations covering 10 countries and Deana and I are both keen to encourage and support the formation of more networks/foundations so that CJD families are assisted and supported globally.
The CJDISA also has a Friends and Advisory Group (F & A group) that is made up of 31 of the worlds most renowned prion disease experts, researchers and professionals. We are currently in the process of inviting 4 more experts to join this group. Members of this group have all shown enormous commitment by sharing their vast knowledge of prion disease and sharing information on current research. This assists us to provide CJD family members and people at risk with up to date and accurate information.
The CJDISA has been invited since 2007 to bring the faces of people personally affected to the International Prion conferences and we hope you will continue to support us in doing this in the future. Sharing of personal stories is something that touches the hearts of the researchers and experts and brings a true understanding of the importance of their work to find a treatment or cure for this devastating disease.I are both keen to encourage and support the formation of more networks/foundations so that CJD families are assisted and supported globally .
Deana shares her personal story:
“My family has the genetic form of CJD. We have lost 13 family members spanning 5 generations. After the loss of my mom in 1998 I felt I needed to do something so that other families did not have to feel as alone as we did. I am a nurse so I know how to navigate the healthcare system in the US but we had many challenges. I did not want that to happen to others – if I could help even one person it was worth it. I have become an international speaker on CJD, educating many types of healthcare professionals about CJD, caring for patients and families effected by CJD, infection prevention and other topics. I support many families both during and after their interaction with CJD. I am a board member of the CJD Foundation in the US and a member of the CJD International Support Alliance.”