Dedication to the UK Charity Trust       


Jack Shields

"It drives me mad, yes, but I'm a very patient person and
I won't be beaten."

Jack Shields

Jack Shields (retired chemical scientist and business owner) of Thropton, Northumberland, England established the UK CADASIL Research and Support Trust on January 16, 2005. Due to his failing health, the trust closed in June 2011. Although he lost his valiant battle with CADASIL on August 26, 2011…it is through his remarkable legacy that he will always remain victorious. 

Born in Walker, England, Mr. Shields did research work in Tyneside after an apprenticeship with Newcastle-based Howard Grubb Parsons Company. He later gained a Master of Science degree and was made a fellow of the Royal Institute of Chemistry. Founded in 1877 as the Institute of Chemistry of Great Britain, its role was to focus on qualifications and the professional status of chemists. Retiring in 1988 due to ill health, Jack became concerned about the general worldwide lack of awareness surrounding CADASIL. 

As a result of Jack Shield's battle with CADASIL, he worked diligently to establish the trust in England. The objectives were: To promote the relief of persons suffering from Cerebral Autosomal Dominant Arteriopathy with Subcortical Infarcts and Leukoencephalopathy. (An inherited condition with lead to blood vessels which are known to result in strokes and other changes to the brain and which is known as CADASIL) in such ways as the trust shall from time to time fit including without limitation:

1. By conducting, promoting and encouraging research for the benefit of the public into the cause, management and cure of CADASIL and if considered appropriate by the directors of related condition and to disseminate the results of any such research.

2. By establishing, maintaining and promoting the establishment of an international website (or any other appropriate medium of communication) to disseminate for the benefit of the public the latest authoritative technical information on diagnostic methods, research and evaluated clinical methods of treatment for any condition affecting the person suffering from CADASIL.

3. By establishing, maintaining or including, or by promoting or encouraging the establishment, maintenance and conduct of facilities for treatment, care, support or alleviation of symptoms of persons suffering from CADASIL.

As Joan (Jack’s wife) has said, Jack with the UK CADASIL Research and Support Trust and Billie Duncan-Smith with CADASIL Together We Have Hope in America are mavericks for CADASIL due to their ground breaking efforts in this devastating disease. The collaboration between the two groups was solidified in January 2005 when Jack announced on his CADASIL Yahoo Group that the UK Trust was “lucky enough to get Billie to join our Trust and we have been working very hard planning our future cooperation. This is the first time we have met and already she is just like one of the family. My wife and her were laughing and talking so loudly this evening after dinner, which I had to make a complaint on behalf of the sick and aged (me)! Kindest, Jack”

Jack not only organized the UK Trust, but built relationships with experts to encourage and support research (particularly stem-cell) into finding a cure. He additionally began self experimenting for a CADASIL treatment. Although not a trained doctor, he combined personal knowledge of the condition and common sense, and found a natural amino acid amino acid (əmē`nō), any one of a class of simple organic compounds containing carbon, hydrogen, oxygen, nitrogen, and in certain cases sulfur. These compounds are the building blocks of proteins. Treatment (L-Arginine) that was successful in stopping his mini-strokes and migraines.

Jack was instrumental in getting the first ever CADASIL Symposium birthed in 2005. CADASIL experts from Germany and England presented information focusing on the clinical and pathological aspects of CADASIL at the symposium in addition to Jack’s presentation on his self study.


The symposium was started with Jack announcing the launch of the CADASIL Research Support Trust Charity. Featured below are: Billie Duncan-Smith (CADASIL TWHH), Jack Shields (UK CADASIL Trust), the Honorable MP Alan Beith (from the House of Commons as patron), and Dr. Colin Doig (heart specialist and trustee). Jack persevered and continued his awareness efforts. 

On October 31, 2005, a documentary on CADASIL (featuring Jack) was aired on the BBC T.V. Program Inside Out – North East. To see this video go to:

Jack Shields donated personal money to the trust to aid in funding research.
Some of the funded research included: 

Funding Research for Newcastle University
Funding MRC (UK), NIH (NINDS), Alzheimer's Research Trust (UK), U-1999, Alzheimer's Association (USA) and CADASIL Trust (UK).

2009 - Neuropathological Correlates of Temporal Pole White Matter Hyperintensities in CADASIL - Mr. Jack Shields of the CADASIL Trust is gratefully acknowledged for supporting the fellowship to RWCL. Our work was enabled by grants from the Medical Research Council (UK), the CADASIL Trust (UK), the Alzheimer’s Research Trust (UK) and the National Institutes of Health (NINDS).

2006 - Small Vessel Disease and Subcortical Vascular Dementia - Our work has been supported by grants from the Medical Research Council (UK), the EC grant QLK6-CT-1999-02112, the B Overstreet fund of the Alzheimer's Association (USA), the Alzheimer's Research Trust (UK), and the CADASIL Trust (UK).

2006 - Hereditary multi-infarct dementia of the Swedish type is a novel disorder different from NOTCH3 causing CADASIL - Our work was supported by grants from the Medical Research Council (UK), Alzheimer's Research Trust (UK) and EU (QLT-1999) and the CADASIL Trust

2006 - Cholinergic Neuronal Deficits in CADASIL - Our work has been supported by grants from the Medical Research Council (UK), the European Commission award QLTK-1999-04, the Alzheimer’s Association (USA) and the Alzheimer’s Research Trust (UK). We also acknowledge award of a fellowship to W.C.L. from the CADASIL Trust (UK)

Funding MRC (UK), NIH (NINDS), Alzheimer's Research Trust (UK), U-1999, Alzheimer's Association (USA) and CADASIL Trust (UK).

Many individuals have expressed their appreciation for Jack’s efforts from even the beginning of the trust’s organization. Here are just a few of the many tributes he was blessed to receive during his life-time: 

“Meeting Jack Shields and becoming involved it the CADASIL Trust can be described as the best thing to happen to me. Jack has done SO MUCH for all us affected by CADASIL. He has dedicated his life to it. It makes me happy every day knowing that he is here searching for a cure. He is the kindest and most determined person I know and I love him dearly.”

“Thank God Jack discovered the many beneficial effects of L-Arginine for CADASIL patients; this has truly been helpful to so many people. I am very thankful to people such as Billie Duncan-Smith and Jack Shields. Without their hard work and effort into this disease not much would be going on right now.”

“The input of Jack Shields is truly presenting me with hope from time to time. Thank you Jack for staying positive amongst all our difficulties! Because together we truly have hope!”

“I saw the CADASIL Documentary. I had heard about it, but had never seen it. Wow. I was diagnosed with CADASIL in 2004 and I have had 2 strokes. I am 33 years old. I follow Jack Shields L-Arginine regiment and I believe it is helping me. I believe in his research and I continue to believe that there is hope!” 

I also owe a debt of gratitude to Jack Shields for bringing the potential benefits of L-Arginine to our attention.

“I have been taking the L-Arginine for three months now and have not had a migraine since. Thank you Jack Shields!” 

“I like Mr. Shield’s attitude. Thank you so much all who make any information available.”

A Personal Tribute By Billie Duncan-Smith
Jack Shields had a heart of gold and dedicated his life to CADASIL support and research. He truly is the pioneer for CADASIL. There are no words which can adequately express the depth of my admiration and appreciation for all of Jack's efforts in putting CADASIL on the map and for especially using his own finances to support research. I, like so many other members of the CADASIL community, was heartbroken to learn of Jack's passing in August 2011. Patients and families in the UK, you may contact either or for support. 

I had the privilege of first meeting Jack and his wife (Joan) when I attended the 2005 CADASIL UK Trust Symposium. They opened their home to me while Jack and I planned and worked. Jack and his family will always have a special place in my heart. In keeping with his maverick spirit and dynamic legacy, the Board of Directors at CTWHH will strive to always make a positive difference, just as Jack did. 
UK Trust Dedication - Written by Billie Duncan-Smith CADASIL Together We Have Hope, Director 09/2011