News
News & Articles
- Update on Potential Therapies for Lowe Syndrome and Dents2 – April 2025
- UK Family Outreach Meetings 2025 (see Facebook or Click here)
- LST Expense Claim Form
- LST Expense Claim Form (Google Sheet)
- 2023 Newsletter
- 2023 CanFite drug therapy for Lowe and Dents2 Syndrome
- 2023 Families invited to participate in Cerebra Neurological survey
- Lowe Syndrome Research conference TIGEM 2023 – See pictures, videos and latest research summaries
- 2021 Jenny Gallop Gurdon Institute, University of Cambridge & Zurich potenrtial breakthrough on treatment for Lowe Syndrome Kidney disorder
- Cancer Drug alpelisib restores kidney function in Lowe syndrome and Dent disease
- Cancer drug can rebalance kidney function in devastating genetic disease
- Mark’s inspirational life with Lowe Syndrome – Mark’s DOB is 25th July 1967
- Perdue 2021 Grant Gward
- 2020 Newsletter
- Birmingham Research Update
- Re-release of charity CD “sounds of the pub” – With the Coronavirus (COVID-19) making many pub goers housebound, Lowe Syndrome Trust is re-offering ‘Sounds of The Pub’ CD on Amazon. Just play the CD from the safety and comfort of home to recreate your local pub atmosphere! The proceeds from CD sales will be kindly donated to the Charity by the CD and film director John Mackenzie, who directed “12 in a Box” and other films.
- 2019 Newsletter
- The Story So Far Leaflet – View
- Lowe Syndrome Family Medical Information Booklet – View
- BBC News Oct 2017 Mother calls for Independent Inquiry Lowe Syndrome Child – View
- 2016 Newsletter
- 2015 Newsletter
- Charity Supporters Letter from Jonathan Ross – View
- Birmingham University Neurodevelopmental Research Grant Award – View
- Exclusive Cadbury Gold Wispa Bar on sale for Lowe Syndrome Charity
- Ham and High Article – One Direction Pitch In to help Lowe – View
- Melanie C Calender 2013 for Lowe Syndrome Charity – Download Poster
- Ham and High Article garden of hope 2012 launch – View
- Look to the Stars – Lowe Sydrome Garden of Hope 2012 – View
- Dr Tim Levine – OCRL Institute of Opthalmology 2012 – View
- One Direction Signed Sweatshirt auction 2013 – View
- Good Housekeeping Inspirational Women – View
- Breakthrough Breastcancer Inspirational Awards 2009 – View
- Star newspaper 2012 – View
- Lowe Charity Bracelet donation – View
- Thomas Wiley – My Next Goal is for you – View
- Press Release: March 2008 – View
- Press Release: Purdue University – View
- Hello! magazine Jonathan Ross – View
- Hello! magazine Floridita Charity Ball – View
- BBC news 2008 – Manchester University Zebra Fish study into Lowe Syndrome – View
- Daily Express 2008 Penny Lancaster and Lowe Syndrome Charity
- Imperial College London Newsletter 2008 – Lowe Syndrome Research
- Dr Antony Norden – My introduction to Lowe Syndrome – View
- Visit to Italy Lowe Association AISLO 2007 – View
- 2006 Charity Newsletter – View
- Andrew Money – It is with great sadness that Andrew Money passed away age 53. Andrew was fiercely independent having living in his own flat for the last twenty five years. His funeral was held in Evesham Vale Christian Centre 12th September 2025 – View old article on Andrew
- Feeling Lowe – View
- 2005 Take it Easy Magazine – Oscar thomas
WebLinks for further information
- UK Paul James https://www.livingwithlowes.com
- Lowe Syndrome Trust – links on UK NHS website https://www.nhs.uk/services/
service-directory/lowe- syndrome-trust/N10500301 - Facebook group page for English speaking families maintained by LSA https://www.facebook.com/groups/1418717108395463
- Global Lowe Syndrome Groups:
USA LSA https://lowesyndrome.org (Main website for medical and general information)
Italy AISLO https://www.tigem.it/research/research-faculty/staiano; Also see https://www.tigem.it/newsroom/news-events/new-collaboration-for telethon-and-canfite-thanks-to-dematteis-work
France ASL https://www.syndrome-lowe.org
Spain ASLE https://www.sindromelowe.es
Germany https://www.lowe-syndrom.de
USA Dent Disease Foundation https://www.dentdisease.org Request a NHS passport click here to download the Lowe CamRare form and get help to fill it in from your Doctor or hospital