Carol Jennings

{{Short description|British Alzheimer's advocate and campaigner (1954–2024)}} {{Use dmy dates|date=September 2023}} {{Infobox person | name = Carol Jennings | image = Carol Jennings.jpg | birth_name = Carol Joyce Bexon | birth_date = {{birth date|df=y|1954|03|25}} | death_date = {{death_date_and_age|df=y|2024|03|29|1954|03|25}} | death_place = Coventry, England | birth_place = Nottingham, England | years_active = 1986–2024 | known_for = Alzheimer's disease activism }}

'''Carol Joyce Jennings''' ({{née}} '''Bexon'''; 25 March 1954 – 29 March 2024) was a British campaigner and advocate for research into Alzheimer's disease. She served as an honorary Vice-President of the Alzheimer's Society until her death in 2024.<ref name="Alzheimers Society" /> Through her activism in the 1980s, Jennings brought her family to the attention of researchers studying the disease, which subsequently led to the discovery of the London Mutation.<ref name="AlzForum">{{cite web |title=APP V717I (London) |url=https://www.alzforum.org/mutations/app-v717i-london |website=Alzheimer Research Forum |access-date=12 September 2023}}</ref><ref name="HIH.gov">[http://www.nia.nih.gov/NewsAndEvents/JohnHardyPhD.htm/ HIH.gov] {{webarchive |url=https://web.archive.org/web/20111105213913/http://www.nia.nih.gov/NewsAndEvents/JohnHardyPhD.htm/ |date=5 November 2011 }}</ref> This mutation, found on the Amyloid Precursor Protein (APP) gene located on chromosome 21, marked a significant breakthrough in understanding the genetic basis of Alzheimer's disease<ref name="Alzheimers Society">{{cite web |title=Honouring a couple affected by dementia for their contributions to dementia research |url=https://www.alzheimers.org.uk/blog/honouring-couple-dementia-their-contributions-research |website=Alzheimer's Society |access-date=12 September 2023}}</ref> and provided evidence for the development of the 'amyloid hypothesis', which attempts to explain the underlying causes of Alzheimer's disease.<ref name="Alzheimers Society" /><ref name="UCL Lecanemab">{{cite web |title=Feature: The 'historic' Alzheimer's breakthrough that is 30 years in the making |url=https://www.ucl.ac.uk/news/2022/dec/feature-historic-alzheimers-breakthrough-30-years-making |website=University College London |date=2 December 2022 |access-date=12 September 2023}}</ref>

==Early life and biography== Jennings was born in Nottingham, England, to Joyce and Walter Bexon. She received her education at Bilborough Grammar School and later attended Chester College, where she completed her teacher training. She went on to marry Stuart Jennings, a Methodist minister and historian, and they had two children.<ref name="i">{{cite news |last1=Zhang |first1=Gary |title=Three generations of a British family are helping the fight against Alzheimer's |url=https://inews.co.uk/inews-lifestyle/people/three-generations-british-family-helping-fight-alzheimers-81618 |access-date=13 September 2023 |work=i |date=30 July 2017}}</ref><ref name="Sunday Post">{{cite news |last1=Scougall |first1=Murray |title=Rare hereditary form of dementia casts shadow over family |url=https://www.sundaypost.com/fp/rare-hereditary-form-of-dementia-casts-shadow-over-family/ |access-date=13 September 2023 |work=The Sunday Post |date=5 December 2016}}</ref> It was during this period that her father, Walter, in his mid-50s at the time, began to exhibit symptoms of Alzheimer's disease.<ref name="FutureLearn">{{cite web |title=Carol's story: dementia in the family |url=https://www.youtube.com/watch?v=uhuGrmU8sJQ |website=FutureLearn | date=25 March 2016 |access-date=12 September 2023}}</ref>

==Discovery of the London Mutation== By the mid-1980s, three of Walter's siblings also displayed signs of Alzheimer's disease, with symptoms emerging much earlier than expected—in their 40s and 50s. Convinced that there must be a genetic link and determined to find answers, Jennings wrote a letter to the research team led by John Hardy in the spring of 1986.<ref name="UCL Eureka">{{cite web |title=A Eureka Moment: Carol's Story |url=https://www.ucl.ac.uk/campaign/case-studies/2018/sep/eureka-moment-carols-story |website=University College London |date=19 September 2018 |access-date=12 September 2023}}</ref> At that time, Hardy was an Assistant Professor of Biochemistry at St. Mary's Hospital, Imperial College London.<ref name="HIH.gov" />

Genetic Alzheimer’s is rare, accounting for only about 1% of Alzheimer’s cases, but Hardy believed that Jennings’s family could provide clues to the cause of the condition in the wider population, known as 'sporadic Alzheimer's disease'.<ref name="UCL Lecanemab" />

To explore this possibility, Professor Hardy and his team of scientists and clinicians, including Professor Martin Rossor collected blood samples from the Jennings family to compare the genetic differences between those who developed Alzheimer's and those who did not. The search took about five years. From the blood samples, DNA was extracted, and Hardy’s team used the Southern blotting technique to examine the genes on chromosome 21. This chromosome was chosen because individuals with three copies of chromosome 21 (Down syndrome) all develop Alzheimer's disease.<ref name="Insights from Down Syndrome">{{cite journal |last1=Wiseman |first1=Frances K. |last2=Al-Janabi |first2=Tamara |last3=Hardy |first3=John |last4=Karmiloff-Smith |first4=Annette |last5=Nizetic |first5=Dean |last6=Tybulewicz |first6=Victor L. J. |last7=Fisher |first7=Elizabeth M. C. |last8=Strydom |first8=André |title=A genetic cause of Alzheimer disease: mechanistic insights from Down syndrome |journal=Nature Reviews Neuroscience |date=September 2015 |volume=16 |issue=9 |pages=564–574 |doi=10.1038/nrn3983 |pmid=26243569 |pmc=4678594 }}</ref>

The breakthrough came in 1991. Alison Goate, a junior researcher on the team, uncovered the specific gene mutation responsible for the disease in Jennings’s family. Goate, now a professor at Icahn School of Medicine at Mount Sinai, NY, later recalled the discovery as a "eureka moment."<ref name="UCL Eureka" /> The research findings were published in Nature on 21 February 1991,<ref>{{cite journal |last1=Goate |first1=Alison |last2=Chartier-Harlin |first2=Marie-Christine |last3=Mullan |first3=Mike |last4=Brown |first4=Jeremy |last5=Fidani |first5=Liana |last6=Giuffra |first6=Luis |last7=Haynes |first7=Andrew |last8=Irving |first8=Nick |last9=James |first9=Louise |last10=Mant |first10=Rebecca |last11=Newton |first11=Phillippa |last12=Rooke |first12=Karen |last13=Roques |first13=Penelope |last14=Talbot |first14=Chris |last15=Pericak-Vance |first15=Margaret |last16=Roses |first16=Alien |last17=Williamson |first17=Robert |last18=Rossor |first18=Martin |last19=Owen |first19=Mike |last20=Hardy |first20=John |title=Segregation of a missense mutation in the amyloid precursor protein gene with familial Alzheimer's disease |journal=Nature |date=21 February 1991 |volume=349 |issue=6311 |pages=704–706 |doi=10.1038/349704a0 |pmid=1671712 |bibcode=1991Natur.349..704G |s2cid=4336069 |url=https://www.nature.com/articles/349704a0 |access-date=12 September 2023|url-access=subscription }}</ref> with a summary reported in the British press on 16 February.<ref>{{cite news |last1=Mihill |first1=Chris |title=Defective gene link to dementia disease |work=The Guardian |date=16 February 1991}}</ref><ref>{{cite news |last1=Highfield |first1=Roger |title=British first to find a cause of Alzheimer's |work=The Daily Telegraph |date=16 February 1991}}</ref><ref>{{cite news |last1=Prentice |first1=Thomson |title=Family link leads to breakthrough on Alzheimer's Disease |work=The Times |date=16 February 1991}}</ref>

The mutation, known as the 'London mutation,' affects the amyloid precursor protein (APP) gene, leading to the formation of amyloid plaques in the brain. Amyloid disrupts normal brain processes by overactivating brain cells and causing ongoing inflammation. It can also impact blood flow and have an impact on other proteins in the brain. When excessive amyloid accumulates, it can interact with the toxic protein tau, causing neuronal death and the symptoms of Alzheimer's disease. In those with genetic Alzheimer’s, this process occurs early because the patient produces too much APP. However, the same process also happens in those with non-genetic Alzheimer’s, albeit at a slower rate.<ref name="Insights from Down Syndrome" />

In 1992, as a direct result of the discovery of mutations in the APP gene, Professor Hardy and Professor David Allsop published the amyloid cascade hypothesis. They hoped that this hypothesis would help in designing drugs to intervene in the disease's progression, influencing the direction of Alzheimer’s research for the following three decades.<ref name="UCL Lecanemab" />

==Later developments== After the discovery of the London mutation, Jennings left her teaching career to work in Alzheimer's advocacy full-time. Initially, she served as the Alzheimer's Society's first Coordinator for Younger People with Dementia and later worked as an independent advocate for dementia caregivers.<ref>{{cite web |title=Services for younger people with Alzheimer's disease and other dementias |url=https://www.rcpsych.ac.uk/docs/default-source/improving-care/better-mh-policy/college-reports/college-report-cr135.pdf |publisher=Royal College of Psychiatrists |access-date=13 September 2023}}</ref> During this period, Jennings also worked alongside Penelope Roques and Jill Walton to support members of the Pick's Disease Support Group, the forerunner of what would later become Rare Dementia Support (RDS), a world-leading service for people affected by rare dementias based at the UCL Dementia Research Centre.<ref>{{cite web |title=The Jennings vs Alzheimer's: Shaping a New Treatment Era Through Discovery |url=https://www.raredementiasupport.org/news/the-jennings-vs-alzheimers-shaping-a-new-treatment-era-through-discovery/ |website=Rare Dementia Support |access-date=20 May 2026}}</ref> She is credited as the first support adviser of that group, years before the organisation formally came into existence.

As the amyloid cascade hypothesis gained momentum, Professor Hardy received recognition for his contributions to the field. In 2015, Hardy became the UK's first recipient of the Breakthrough Prize in Life Sciences for "discovering mutations in the amyloid precursor protein (APP) gene that cause early-onset Alzheimer's disease, linking the accumulation of APP-derived beta-amyloid peptide to Alzheimer's pathogenesis, and inspiring new strategies for disease prevention." In his acceptance speech for this award, he expressed special gratitude to Jennings's family. In 2018, Hardy, alongside Christian Haass, Bart De Strooper and Michel Goedert, was honoured with the Brain Prize for "ground-breaking research on the genetic and molecular basis of Alzheimer's disease."<ref name="Brain Prize">{{cite web |title=Alzheimer's Disease - The Lundbeck Foundation |url=https://lundbeckfonden.com/the-brain-prize/alzheimers-disease-2018 |website=Lundbeck Fonden |access-date=12 September 2023}}</ref>

Over time, researchers have expanded upon and challenged this hypothesis, but developing drugs that target amyloid proteins has proven to be a significant challenge, with many failures, underwhelming results, and dangerous side effects reported.<ref name="Immunotherapies">{{cite journal |last1=Vogt |first1=Anne-Cathrine S. |last2=Jennings |first2=Gary T. |last3=Mohsen |first3=Mona O. |last4=Vogel |first4=Monique |last5=Bachmann |first5=Martin F. |title=Alzheimer's Disease: A Brief History of Immunotherapies Targeting Amyloid β |journal=International Journal of Molecular Sciences |date=15 February 2023 |volume=24 |issue=4 |pages=3895 |doi=10.3390/ijms24043895 |pmid=36835301 |pmc=9961492 |doi-access=free }}</ref>

When Jennings herself began to develop symptoms of Alzheimer's disease in 2008, she took a step back from her speaking and advocacy work.<ref name="Coventry Telegraph">{{cite news |last1=Yedroudj |first1=Latifa |title=The Coventry woman who became a pioneer in Alzheimer's research |url=https://www.coventrytelegraph.net/news/coventry-news/coventry-woman-who-became-pioneer-26630049 |access-date=13 September 2023 |work=Coventry Telegraph |date=8 April 2023 |language=en}}</ref> However, with the development of new and successful anti-amyloid treatments, journalists and researchers rekindled their interest in the origins of the amyloid hypothesis and Carol Jennings's involvement.

One such success was shown in a large-scale trial of the monoclonal antibody treatment lecanemab. Professor Hardy described the outcome as both "modest" and "historic," and hailed it as the beginning of the end for Alzheimer's disease. In particular, there is hope that anti-amyloid therapies could eventually be used to prevent the disease ever progressing to the symptomatic stage.<ref name="Scientific American">{{cite news |last1=Abbott |first1=Alison |title=Treating Alzheimer's Before It Takes Hold |url=https://www.scientificamerican.com/article/treating-alzheimer-rsquo-s-before-it-takes-hold/ |access-date=13 September 2023 |work=Scientific American |date=16 June 2022}}</ref> This resulted in renewed press interest in the Jennings family, and their contribution was once again covered by the press.<ref name="Whipple">{{cite news |last1=Whipple |first1=Tom |title=Has this man found the key to the Alzheimer's time bomb? |url=https://www.thetimes.com/uk/healthcare/article/has-this-man-found-the-key-to-the-alzheimers-time-bomb-nttt96f95 |access-date=13 September 2023 |work=The Times |date=18 June 2021}}</ref>

Jennings died on 29 March 2024, four days after her 70th birthday.<ref name="AlzSoc Death">{{cite web |title=It's with great sorrow that we share the... - Alzheimer's Society |url=https://www.facebook.com/alzheimerssocietyuk/posts/pfbid0pdNTocvfGY7n8FpNjnPFfmYf3rSi7RSajCwZ7mdHNuvbXZapFC2jXMtyCn9eEi47l |website=Facebook |access-date=11 April 2024}}</ref><ref>{{cite web |title=Circuit News, April 2024 |url=http://www.woodsidemethodist.org.uk/#xl_xr_page_index-h |website=Woodside Avenue Methodist Church Centre |access-date=21 April 2024}}</ref><ref>{{Cite web |date=2024-04-30 |title=Carol Jennings, whose family's genetics informed amyloid cascade hypothesis, dies at 70 |url=https://www.thetransmitter.org/alzheimers-disease/carol-jennings-whose-familys-genetics-informed-amyloid-cascade-hypothesis-dies-at-70/ |access-date=2024-05-05 |website=The Transmitter: Neuroscience News and Perspectives |language=en-US}}</ref>

==Recognition== In 2023, both Carol and Stuart Jennings were appointed honorary Vice-Presidents of the Alzheimer's Society, acknowledging their "extraordinary contribution to the field of dementia research".<ref name="Alzheimers Society" /><ref name="Vice Presidents YouTube">{{cite web |title=Carol and Stuart Jennings – Vice Presidents at Alzheimer's Society |url=https://www.youtube.com/watch?v=W3y7b1ieuL0 |website=Alzheimer's Society |date=30 March 2023 |access-date=12 September 2023}}</ref> To further honour their legacy, the Alzheimer's Society and the Jennings family established the Carol Jennings Fellowship to support emerging researchers in Alzheimer's disease.<ref name="Fellowship">{{cite web |title=Honouring Carol Jennings and her legacy through groundbreaking dementia research |url=https://www.alzheimers.org.uk/news/2024-12-20/honouring-carol-jennings-and-her-legacy-through-groundbreaking-dementia-research |website=Alzheimer's Society |access-date=10 March 2025 |date=20 December 2024}}</ref>

In May 2026, Jennings was awarded a posthumous honorary doctorate, DSc (Med), by University College London, in recognition of her contribution to research that helped establish the amyloid cascade hypothesis and ultimately paved the way for the first disease-modifying therapies for Alzheimer's disease.<ref>{{cite web |title=Alzheimer's campaigner awarded honorary doctorate for "immeasurable" contributions |url=https://www.ucl.ac.uk/news/2026/may/alzheimers-campaigner-awarded-honorary-doctorate-immeasurable-contributions |website=University College London |date=19 May 2026 |access-date=20 May 2026}}</ref> The degree was conferred by Professor Sir John Hardy at a UCL graduation ceremony, with Stuart Jennings accepting it on Carol's behalf. Hardy noted that her impact on the research was "immeasurable" and would continue to resonate for decades.

==The Jennings vs Alzheimer's==

In 2022, the BBC announced the commissioning of a feature documentary recounting the story of the Jennings family and their ongoing involvement in Alzheimer's research.<ref name="BBC">{{cite web |title=BBC announces new documentaries at Sheffield Doc/ Fest 2022 |url=https://www.bbc.co.uk/mediacentre/2022/new-documentaries-announced-sheffield-documentary-festival |website=BBC |access-date=12 September 2023}}</ref><ref name="TV Zone">{{cite web |title=Family 23: BBC Two Announce new intimate family documentary |url=https://www.tvzoneuk.com/post/bbc2-family23-ann1 |website=TV Zone UK |date=30 June 2022 |access-date=12 September 2023}}</ref> The resulting film “The Jennings vs Alzheimer’s” was broadcast on BBC Two and BBC iPlayer on 13 May 2024 in the UK.<ref name="JvA Press Release">{{cite web |title=The Jennings vs Alzheimer's |url=https://www.bbc.com/mediacentre/proginfo/2024/20/the-jennings-vs-alzheimers |website=BBC |access-date=24 July 2024}}</ref> Directed by Irish filmmaker Niamh Kennedy, the documentary received positive reviews from major newspapers, including The Guardian,<ref name="Guardian review">{{cite news |last1=Mangan |first1=Lucy |title=The Jennings v Alzheimer's review – how one letter caused a medical revolution |url=https://www.theguardian.com/tv-and-radio/article/2024/may/13/the-jennings-v-alzheimers-review-how-one-letter-caused-a-medical-revolution |access-date=24 July 2024 |work=The Guardian |date=13 May 2024}}</ref> The Times,<ref name="Times review">{{cite news |last1=Dowell |first1=Ben |title=The Jennings vs Alzheimer's review — would you want to know if you had the gene? |url=https://www.thetimes.com/culture/tv-radio/article/the-jennings-vs-alzheimers-review-would-you-want-to-know-if-you-had-the-gene-d9qrbd3mp |access-date=24 July 2024 |work=The Times |date=13 May 2024}}</ref> and The Daily Telegraph.<ref name="Telegraph review">{{cite news |last1=Rees |first1=Jasper |title=The Jennings v Alzheimer's: a fascinating insight into one woman's selfless sacrifice |url=https://www.telegraph.co.uk/tv/2024/05/13/the-jennings-v-alzheimers-bbc-two-review-documentary |access-date=24 July 2024 |work=The Telegraph |date=13 May 2024}}</ref> It won the award for the Best Science Documentary category at the 2024 Grierson Awards.<ref name="Televisual">{{cite web |title=BBC tops Grierson awards shortlist |url=https://www.televisual.com/news/bbc-tops-grierson-awards-shortlist/ |website=Televisual |date=22 July 2024 |access-date=24 July 2024}}</ref><ref>{{Cite tweet |ref={{harvid|Grierson|2024}} |user=griersontrust |number=1854250891156537738 |date=6 November 2024 |title=The #GriersonAwards winner for Best Science Documentary goes to The Jennings vs Alzheimer's 🌟 - presented by @lizbonnin |access-date=6 November 2024}}</ref>

== The Carol Jennings Fellowship ==

The Carol Jennings Fellowship was established by the Alzheimer's Society in 2023 to support early-career researchers in Alzheimer's disease. The fellowship honours Carol Jennings' legacy of advocacy and her family's contribution to advancing understanding of the genetic causes of Alzheimer's disease.<ref name="Fellowship" />

=== Recipients === * '''2023-2024''': Dr. Johanna Jackson (Imperial College London) – Dr. Jackson's research utilises advanced techniques to investigate the role of genetics, proteins, and other factors in making synapses vulnerable to damage in Alzheimer's disease.<ref>{{Cite tweet |ref={{harvid|Jackson|2017}} |last=Jackson |first=Jo |user=jojacksonhere |number=1760603653516243126 |date=22 February 2024 |title=Thrilled to be named as an @alzheimerssoc Dementia Leader, the 1st recipient of the Carol Jennings Fellowship and supported by the Hamilton Neal fund. |access-date=24 July 2024}}</ref><ref name="UKDRI">{{cite web |title=From academia to industry and back again: in conversation with Dr Jo Jackson |url=https://ukdri.ac.uk/news-and-events/from-academia-to-industry-and-back-again-in-conversation-with-dr-jo-jackson-1 |website=UK Dementia Research Institute |date=21 February 2024 |access-date=24 July 2024}}</ref> * '''2024-2025''': Dr. Chris Hardy (University College London) – Dr. Hardy's research focuses on the connection between hearing loss and dementia, developing new tests of "brain hearing" to help detect, diagnose, and track dementia.<ref>{{cite web |last1=Hammond |first1=Lisa |title=Dr Chris Hardy appointed as Alzheimer's Society Carol Jennings Fellow |url=https://www.dementiaresearcher.nihr.ac.uk/dr-chris-hardy-appointed-as-alzheimers-society-carol-jennings-fellow/ |website=Dementia Researcher |access-date=10 March 2025 |date=20 December 2024}}</ref><ref name="CHardyUCL">{{cite web |title=UCL researcher named as Alzheimer's Society Carol Jennings Fellow |url=https://www.ucl.ac.uk/news/2024/dec/ucl-researcher-named-alzheimers-society-carol-jennings-fellow |website=University College London |access-date=10 March 2025 |date=20 December 2024}}</ref> * '''2025-2026''': Dr. Ian Harrison (University College London) – Dr. Harrison's research centres on boosting the glymphatic system to remove harmful proteins association with Alzheimer's disease.<ref name="2025Fellowship">{{cite web |title=Honouring Carol Jennings and her legacy through groundbreaking dementia research |url=https://www.alzheimers.org.uk/news/2025-12-08/honouring-carol-jennings-and-her-legacy-through-groundbreaking-dementia-research |website=Alzheimer's Society |access-date=11 December 2025}}</ref>

==See also== *Early-onset Alzheimer's disease

==References== ===Citations=== {{Reflist}}

===Works cited=== {{refbegin}} *{{cite book |last1=Armstrong |first1=Sue |title=Borrowed time: The Science of How and Why We Age |year=2019 |publisher=Bloomsbury Sigma |location=London |isbn=978-1-4729-3606-6}} *{{cite book |last1=Jebelli |first1=Joseph |title=In Pursuit of Memory: The Fight Against Alzheimer's |year=2017 |publisher=John Murray |location=London |isbn=978-1-473-63576-0}} {{refend}}

{{DEFAULTSORT:Jennings, Carol}} Category:1954 births Category:2024 deaths Category:Alumni of the University of Chester Category:Activists from Nottingham Category:Alzheimer's disease activists Category:Deaths from Alzheimer's disease in England