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#069: Beyond Boundaries. Advocacy, Research, and Recognition in MS with Rachel Horne
Manage episode 428119591 series 3562061
MS patient and advocate Rachel Horne sponsors a prize for women in MS research and campaigns for more diversity in clinical trials.
You can read all questions and answers on my blog: https://ms-perspektive.com/69-rachel-horne
Rachel Horne was diagnosed with multiple sclerosis at the age of 43, when she felt fit and healthy. She established the Rachel Horne Award to raise the visibility of women in MS research. The selection is made by a number of volunteers from International Women in MS according to clear criteria.
Rachel also advocates for a more diverse group of study participants in clinical trials. This could help to find the right treatment for each individual MS patient, regardless of age, gender, ethnicity or co-morbidities. The greater the diversity of the study population, the better it is possible to assess effects and find out who benefits most and who does not.
Table of Contents- Introduction - Who is Rachel Horne?
- Personal Experiences and Coping Strategies
- Rachel Horne Prize for Women's Research in MS
- Exploring the Influence of Gender and Ethnicity
- Patient Advocate Activities
- Quickfire Q&A Session
- Farewell
My name is Rachel. I was born in Canada and have lived in the UK for more than 30 years. I was diagnosed with MS in 2009 – about 15 years ago. I am married and have two adult children. Hobbies – I have to say reading!
Finally, what message of hope or encouragement would you like to share with individuals living with MS?I think it is so easy to forget that treatment into MS is a neurological success story. We now have over 20 drugs to treat our disease. People are living longer, better lives with the disease. The days of ‘diagnose and adios” are gone… though I am aware there are many countries in the world where this is not so.
How and where can interested people find you online?I am on X (formerly Twitter): @RachelHorne19
---Thanks to Rachel for all her efforts in making the world more diverse and balanced,
See you soon and try to make the best out of your life, Nele
For more information and positive thoughts, subscribe to my newsletter for free.
Click here for an overview of all podcast episodes published so far.
117 episodes
Manage episode 428119591 series 3562061
MS patient and advocate Rachel Horne sponsors a prize for women in MS research and campaigns for more diversity in clinical trials.
You can read all questions and answers on my blog: https://ms-perspektive.com/69-rachel-horne
Rachel Horne was diagnosed with multiple sclerosis at the age of 43, when she felt fit and healthy. She established the Rachel Horne Award to raise the visibility of women in MS research. The selection is made by a number of volunteers from International Women in MS according to clear criteria.
Rachel also advocates for a more diverse group of study participants in clinical trials. This could help to find the right treatment for each individual MS patient, regardless of age, gender, ethnicity or co-morbidities. The greater the diversity of the study population, the better it is possible to assess effects and find out who benefits most and who does not.
Table of Contents- Introduction - Who is Rachel Horne?
- Personal Experiences and Coping Strategies
- Rachel Horne Prize for Women's Research in MS
- Exploring the Influence of Gender and Ethnicity
- Patient Advocate Activities
- Quickfire Q&A Session
- Farewell
My name is Rachel. I was born in Canada and have lived in the UK for more than 30 years. I was diagnosed with MS in 2009 – about 15 years ago. I am married and have two adult children. Hobbies – I have to say reading!
Finally, what message of hope or encouragement would you like to share with individuals living with MS?I think it is so easy to forget that treatment into MS is a neurological success story. We now have over 20 drugs to treat our disease. People are living longer, better lives with the disease. The days of ‘diagnose and adios” are gone… though I am aware there are many countries in the world where this is not so.
How and where can interested people find you online?I am on X (formerly Twitter): @RachelHorne19
---Thanks to Rachel for all her efforts in making the world more diverse and balanced,
See you soon and try to make the best out of your life, Nele
For more information and positive thoughts, subscribe to my newsletter for free.
Click here for an overview of all podcast episodes published so far.
117 episodes
All episodes
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1 #123: Living with MS & Making a Difference. Claudia’s Journey of Fundraising, Resilience, and Hope 1:07:12

1 #122: Living with MS in South Africa. Insights from Advocate & MSSA Vice-Chair Christelle Taute 50:00

1 #121: TheMay50K, and mental strength – a conversation with Susanne Melanie Schmid 23:16

1 #120: From MS to Advocacy – How One Young Scientist Is Changing the Conversation 35:51

1 #119: Voices of Leadership. CEO of MS South Africa on Patient Support and the Future of MS Care 43:25

1 #118: Train Your Brain. How the Brain Health Challenge Empowers People with MS 40:56

1 #117: Empower Yourself. Coping with MS, Fear, and a Changing World 12:06

1 #116: Sugar and health. Why a sugar-reduced diet makes sense with Dr. Franz-Werner Dippel 25:42

1 #115: Stem Cell Therapy for MS – A Conversation with Prof. Christoph Heesen 11:56

1 #114: Traveling with MS. 10 Tips for a Smooth Journey 15:11

1 #113: Empowering Women with MS – Movement, Mindfulness & Motherhood with Dr. Irina Fedulow Plante 47:12

1 112: MSIF – Past, Present and Future with Peer Baneke and Lydia Makaroff 41:21

1 #111: Pregnancy, childbirth, and breastfeeding with multiple sclerosis—my personal experiences 16:28

1 #110: 10 things you should know about MRI scans for MS 40:19

1 #094: Effects of the Mediterranean diet on MS an ECTRIMS Special 27:55


1 #092: Empowering the MS Community: Advocacy, Diversity, and Inclusion with patient expert Roxy Murray 49:15

1 #091: New treatment strategies in MS an ECTRIMS Special 27:06

1 #090: Empowering the black MS community – advocacy, awareness, and support with Natalie Diana Busari 1:12:56

1 #089: Understanding the Hidden Challenges of MS: Sexual, Bladder, and Bowel Health an ECTRIMS Special 22:40

1 #088: Immune Tolerance and MS. How the RED4MS Study Could Change MS Treatment with Dr. Andreas Lutterotti 23:26

1 #087: Understanding and managing Neuromyelitis Optica (NMOSD). Latest Advances in treatment with Dr. Luis Alfonso Zarco 32:06

1 #086: Navigating Menopause with MS – Key insights on symptom progression, aging, and personalized care (ECTRIMS Special) 22:42

1 #085: ECTRIMS Special on innovative MS rehabilitation for better quality of life 17:58

1 084: Vascular dysfunction and Multiple Sclerosis. How Your vessels Could Shape Your MS Journey with Dr. Jonathan Pansieri 48:01

1 #083: ECTRIMS Special on De-escalation and discontinuation of therapies for MS – What does it mean and how can it work? 33:08

1 #082: Living with neuromyelitis optica (NMO) in Denmark with Leda Bresnov 39:30

1 #081: Navigating Treatment and Support for MS, NMOSD, and MOGAD in Montenegro with Dr. Sanja Gluscevic 45:29

1 #080: B-Cell Depletion – Ocrelizumab (Ocrevus), Ofatumumab (Kesimpta, Bonspri), Rituximab (Mabthera, Rituxan), Ublituximab (Briumvi) for active RRMS and SPMS, and early PPMS 30:40

1 #109: Understanding Cognitive Reserve and Its Role in Multiple Sclerosis 16:34

1 #108: How you can use ChatGPT (or another AI) to prepare for the doctor’s consultation 13:24

1 #107: LGBTQ+ and MS: The Fight for Inclusive and Equitable Care with Dr. William Conte 45:57

1 #106: Trigeminal neuralgia and MS – an invisible challenge. Interview with Dr. Monika Köchling 19:35

1 #105: The Sumaira Foundation & NMO: How One Woman’s Journey is Changing Lives Worldwide 40:17

1 #104: Leveraging AI in MS Care and Shared Decision-Making with Dr. Stefan Ebener 50:05

1 #103: Can epigenetic research transform MS treatment? Insights into DNA methylation and MS progression with Dr. Majid Pahlevan Kakhki 42:26

1 #102: MS and domestic violence and abuse (DVA). Raising awareness, offering support, creating change with Sue Britt 1:05:25

1 #101: Shared Decision Making and AI: Making the best decisions for MS together with Dr. Sven Jungmann 47:25

1 #100: The Future of MS Care. Can Digital Twins Predict Your Disease Progression? With Prof. Tjalf Ziemssen 51:34

1 #099: Insights from Groundbreaking MS Studies on Risks, Trends, and Equity an ECTRIMS Special 25:52

1 #098: New Research for Managing Primary Progressive Multiple Sclerosis (PPMS) an ECTRIMS Special 31:22

1 #097: Late-Onset Multiple Sclerosis (LOMS): Symptoms, treatment options, and prognosis with Dr. Abdulkadir Tunc 28:55

1 #096: From Fatigue to Focus. The Power of Sleep and Exercise in Managing MS an ECTRIMS Special 27:16

1 #095: Hidden Challenges – Exploring Smoldering MS with Prof. Gavin Giovannoni 1:03:29
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