A MESSAGE FROM CTWHH BOARD MEMBER
I've known Billie Duncan-Smith for well over 40 years. I've seen her family endure for over 14 years while living under the cloud of CADASIL which seems to have slammed them with more heartache than a family should have to endure. I've marveled at all she's personally done to carry the banner of CADASIL to all who would listen as well as been blessed to have been a part of her journey and proudly serve as a member of the Board of Directors of CTWHH...trying my best to keep up with so many others who work tirelessly. I've been amazed of the connections CTWHH has made with a myriad of doctors, researchers, and organizations around the world who work collegially to find a treatment or cure for CADASIL.
Although there were many CADASIL patients and family members in attendance at the rally in addition to the Board of Directors of CTWHH, Billie truly was on a mission on February 28th. She went up to State Senators and Representatives in attendance and bent their ear, provided them with prepackaged information, and had earnest conversations about the needs of CADASIL patients and families. Some were teary eyed after hearing about what it is like to live with CADASIL day in and day out. She strategically placed herself literally front and center when the official Rare Disease Day photograph was taken on the Texas Capitol Steps to ensure CADASIL signs were visible. As Billie so aptly stated on the CTWHH Facebook page, "Although Rare Disease Day is over, it is important to continue this momentum throughout the year. There is so much to be done and so much we can achieve if we work together."
Although suggestions are welcomed at any time, as CTWHH approaches its 8th anniversary in May, I want to encourage the CADASIL community to share their ideas on how we can focus our efforts in promoting awareness, education, support, and research. Let your voice be heard! Contact us at: firstname.lastname@example.org or feel free to contact me personally at email@example.com. Thank you! Debby Ewald