CADASIL TOGETHER WE HAVE HOPE NON-PROFIT 
MARCH 2013  - NEWS AND UPDATES

  
CADASIL TWHH'S  RARE DISEASE DAY
EFFORTS ARE
RECOGNIZED BY NORD.

 

CADASIL Together We Have Non-Profit Organiation received an uplifting appreciation message on March 7th from NORD - The National Organization for Rare Disorders, applauding awareness efforts and activities. State House events were organized in five states (California, Texas, Massachusetts, Connecticut, and New Jersey) to educate state legislators on the challenges and opportunities.

 

The Board of Directors continues to be honored that CTWHH was one of a few select speakers at the Texas Rally. Although it was a windy day with brisk temperatures for Austin, Texas...the spirits of those in attendance were not diminished in their efforts to educate the general public as well as the Texas legislators about the concerns of those impacted by rare diseases. The passionate presentation by Billie and Steve Duncan-Smith tugged on the heartstrings of those in attendance so much that other speakers and dignitaries utilized key phrases from their presentation (or referenced CTWHH) in their own speeches at the rally. Talk about impact!  

  

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: info@cadasilfoundation.org or feel free to contact me personally at ewaldcoaster@yahoo.com. Thank you! Debby Ewald

 

 
Some Reminders:
  • Sign the CADASIL Registry. As a registry participant, you will be afforded the most up-to-date information on CADASIL by receiving e-mail alerts and newsletters. We timely share information from our International Scientific Advisory Committee as well as researchers and organizations that CTWHH has established and nurtured relationships with for almost 8 years. (Click here.)
     
  • The Board of Directors at CADASIL TWHH appreciates your continued monetary support. 100% of all donations go directly to our mission, vision, and values as we have no paid staff and run strictly on volunteer support and your generous donations. Click on this link to donate to CTWHH. (Click here.)    
     
  • Send a self-addressed stamped envelope to us to receive an emergency reference card for your wallet or the color brochure "Understanding CADASIL."  

     

  • See how you can volunteer, assist, and/or raise awareness. The CTWHH website has several ideas. And as always, we are open to any suggestions you might offer. Please consider making a difference by checking out the link.

    (Click here.)

     

  • If you have not read our January newsletter, be sure to click on the link. Our January newsletter is packed with information. (Click here.)