Agnes Nsofwa and her advocacy for sickle cell patients

The Patient Voice Podcast

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For Good

1
Angela Simmons: From Whippin' Pastry to Single Parenthood & Dating in the Spotlight 42:43

för 21 hours sedan42:43

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42:43

When Jay-Z rapped "in the kitchen like a Simmons whipping Pastry" about their family business in "Empire State of Mind" Angela Simmons knew she made it. She sits down with her brother Joseph "JoJo" Simmons on the For Good podcast to reveal what really happened behind the scenes of Run's House, how she and Vanessa Simmons built the Pastry empire that got Jay-Z's attention, and why Rev Run saying "no" became her biggest motivation. In this unfiltered sibling conversation, Angela opens up about her breakup with Yo Gotti and why she's drawn to certain kinds of men. JoJo hints that she has a type, leading to honest talk about dating patterns and relationships. She also gets real about the unique challenges of raising her son as a single mother and the childhood body image insecurities that JoJo admits he contributed to by calling her "fat" during arguments. Angela also recalls the exact moment she realized she was famous - standing in Times Square after Run's House aired when someone asked for her picture. She and JoJo also break down the pressures of being from a successful family and why having famous parents actually makes it harder, not easier. Also: Pastry outselling Jordan Brand at Foot Locker Body transformation from insecurity to fitness obsession Plant-based lifestyle and wellness routines for mental health Why Simmons kids don't get handouts despite the famous name…

för 4 år sedan 49:12

MP3•Episod hem

After Agnes' daughter was diagnosed with sickle cell disease at 14 months old, she learned everything she could and soon discovered the limited treatment options that patients had access to.

Since then, she's become an advocate for sickle cell patients. With each person that's diagnosed having such a different experience with the disease, Agnes knew that greater knowledge and information was needed as much for patients as for their families.

12 episoder

#Fitness #Podcasting Education #Medicine #Patient Voice Initiative #Patient Voice #Patient Engagement #Patient Experience #Healthcare #Australian Healthcare #Htai #Health Technology Assessments

Agnes Nsofwa and her advocacy for sickle cell patients

The Patient Voice Podcast

published för 4 år sedan

Dela

MP3•Episod hem

After Agnes' daughter was diagnosed with sickle cell disease at 14 months old, she learned everything she could and soon discovered the limited treatment options that patients had access to.

12 episoder

#Fitness #Podcasting Education #Medicine #Patient Voice Initiative #Patient Voice #Patient Engagement #Patient Experience #Healthcare #Australian Healthcare #Htai #Health Technology Assessments

Alla avsnitt

1
Louise Grant 48:31

för 1 year sedan48:31

48:31

Louise is the mother of Isabelle, a 3-year old who lives with a rare condition called Severe Combined Immune Deficiency ("SCID" or the "Bubble Baby condition"). SCID babies are born without a functioning immune system and cannot fight off even the simplest viruses or infections. After Isabelle survived her life-saving Stem Cell Transplant at 7 months old, Louise went on to join the campaign to successfully advocate for SCID to be added to Australia’s Newborn Bloodspot Screening Panel. SCID is now detected, diagnosed and treated soon after birth in Australia - before a baby becomes critically ill or passes away. Louise also sits on the Board of the Immune Deficiencies Foundation of Australia (IDFA), supports other families who have a child born with SCID and is an advocate and peer mentor to families living with any Immune Deficiencies. Immune Deficiencies Foundation of Australia (IDFA) Website https://www.idfa.org.au/ IDFA Facebook https://www.facebook.com/ImmuneDeficiencyFoundationAustralia/ IDFA Instagram https://www.instagram.com/theidfa/ IDFA LinkedIn https://www.linkedin.com/company/the-immune-deficiencies-foundation-of-australia/ Our work at Patient Voice Initiative is only possible thanks to the generous support of our Sponsors; for a full list of both our Gold and Silver contributors, please visit our Website. Find out more about PVI by visiting our website https://www.patientvoiceinitiative.org/ Produced by The Podcast Boss…

1
Clare Devine 46:19

för 1 year sedan46:19

46:19

Claire Devine is a best selling artist and emerging ecommerce/personal branding authority. Her works are collected worldwide and she imbues business and art with heartfelt candour, compassion and kindness. The Granddaughter of celebrated French artists and potters, Claire was born in Toulouse, France and grew up in an art gallery space in Brisbane, Australia. A classical musician and high school teacher, she started painting as a way to pass the evening hours while her handsome Irish husband, Seamus, was away for work. Claire took a break from her regular work when Seamus became ill and their infant son was diagnosed with partial blindness. This break allowed the family to reprioritise, focus on each other and give energy to Claire’s painting. As popularity for Claire’s work grew, The New Devine quickly evolved from a painting pass time into a serious, full-time business. Claire’s art comes from a place of deep love for her family because of their circumstances with Seamus’s poor health and sons’ disability - the journey they went through (and continue to travel) to create contentment, joy and focus on family, love and togetherness all feeds and informs her artistic practice. Claire and Seamus have 3 (ex-premature baby) boys, two with albinism and legal blindness and one with Epilepsy like his father. Claire lives in a little seaside suburb of North Brisbane and loves coffee, vintage champagne, Dad jokes, yoga and long walks with her 'tame wolf.’ Claire’s Website https://thenewdevine.com/ Claire’s Instagram https://www.instagram.com/thenewdevine/ Claire’s LinkedIn https://www.linkedin.com/in/claire-devine-aa6a761a4/ Our work at Patient Voice Initiative is only possible thanks to the generous support of our Sponsors; for a full list of both our Gold and Silver contributors, please visit our Website. Find out more about PVI by visiting our website https://www.patientvoiceinitiative.org/ Produced by The Podcast Boss…

1
Geoff Nyssen 37:28

för 1 year sedan37:28

37:28

Geoff is a dad, husband, blogger, public speaker and an active patient advocate. Since being diagnosed in 2014 with the terminal blood cancer multiple myeloma, Geoff uses this adversity as a means to lead by example in helping others to become empowered with the challenges that they may face. His advocacy includes working as a volunteer for Peter MacCallum Cancer Centre, Snowdome Foundation, the Walter and Eliza Hall Institute of Medical Research and Myeloma Australia. In addition, he provides ‘blood buddy’ support to many diagnosed patients, he is a research ‘consumer’ where he supports many research projects, and he is an active presenter where he provides inspiration to others as they navigate their own adversity. Geoff is also founder/director of MY Mount Eliza Run & Fun Festival, and has raised nearly $400k for research and patient support since 2017. Geoff believes that his diagnosis does not define him, nor limit him, and in fact, powers him towards supporting others, raising awareness and funds for myeloma research. Geoff’s Website https://geoffnyssen.com/ Geoff’s LinkedIn https://www.linkedin.com/in/geoff-nyssen-5457a31/ Geoff’s Facebook https://www.facebook.com/geoffnyssenspage/ Our work at Patient Voice Initiative is only possible thanks to the generous support of our Sponsors; for a full list of both our Gold and Silver contributors, please visit our Website. Find out more about PVI by visiting our website https://www.patientvoiceinitiative.org/ Produced by The Podcast Boss…

1
Ashley Ng 45:20

för 1 year sedan45:20

45:20

Ashley is a diabetes advocate, researcher and healthcare professional. Through her lived experience, she's developed a passion for driving patient-centred healthcare service design and ensuring the lived experience voice is involved from conception to research and health service delivery. Ashley has been part of global diabetes advocacy efforts to amplify the voices of the diabetes community, which led to being awarded the Medtronic Bakken Invitation Award in 2019 and the Diabetes Victoria Outstanding Contribution from Lived Experience award in 2023. Ashley sits on various advisory groups including the Diabetes Victoria consumer advisory committee, is a board member of the Primary Care Diabetes Society of Australia and chairs the Diabetes Australia Kellion Advisory Committee. Ashley’s website Hangry Pancreas https://hangrypancreas.com/ Hangry Pancreas Instagram https://www.instagram.com/hangrypancreas/ Hangry Pancreas/Bittersweet Diagnosis Facebook https://www.facebook.com/bittersweetdiagnosis/ Ashley’s LinkedIn https://www.linkedin.com/in/ashleyng1/ Our work at Patient Voice Initiative is only possible thanks to the generous support of our Sponsors; for a full list of both our Gold and Silver contributors, please visit our Website. Find out more about PVI by visiting our website https://www.patientvoiceinitiative.org/ Produced by The Podcast Boss…

1
Kate Gough 33:20

för 1 year sedan33:20

33:20

Kate Gough is a passionate advocate and parent, dedicated to raising awareness and heralding improvement for those who are born with Spinal Muscular Atrophy (SMA) and their families. As the mother of baby Oakley, who was diagnosed with SMA at eight weeks old, Kate brings a personal perspective to her advocacy work, striving to improve the lives of those with SMA and their families by calling for research and treatment advancements, as well as directly bringing about change by advocating for access to SMA screening in QLD. Move For Oakley Facebook https://www.facebook.com/oakleysSMAadventures Move For Oakley Instagram https://www.instagram.com/moveforoakley/ Our work at Patient Voice Initiative is only possible thanks to the generous support of our Sponsors; for a full list of both our Gold and Silver contributors, please visit our Website. Find out more about PVI by visiting our website https://www.patientvoiceinitiative.org/ Produced by The Podcast Boss…

1
Clare Stuart 40:04

för 1 year sedan40:04

40:04

Clare Stuart is the Policy and Advocacy Manager for the Mito Foundation, advocating for improvements to healthcare, disability and social support for people living with mito. She holds a Masters in Public Health and has contributed to policy development at NSW Ministry of Health and managed an Australian rare disease organisation. Clare played a key role in the foundations of Rare Voices Australia, and was also a steering committee member for the National Strategic Action Plan for Rare Diseases. Her dedication to improving the lives of those who live with mitochondrial disease and rare conditions is informed by her personal experience as the sister of Lizzie, who lived with a rare genetic condition (tuberous sclerosis complex.) Clare Stuart https://www.linkedin.com/in/clare-stuart-84344443/ Mito Foundation https://www.mito.org.au/ Mito Foundation Facebook https://www.facebook.com/MitoFoundation/ Mito Foundation LinkedIn https://www.linkedin.com/company/mito-foundation/ Our work at Patient Voice Initiative is only possible thanks to the generous support of our Sponsors; for a full list of both our Gold and Silver contributors, please visit our Website. Find out more about PVI by visiting our website https://www.patientvoiceinitiative.org/ Produced by The Podcast Boss…

1
How living with bowel cancer drove Nicole's advocacy 58:09

för 3 years sedan58:09

58:09

Nicole is a patient advocate and health consultant. When she was diagnosed with advanced bowel cancer in March 2017, she was told she would likely die within two years. Nicole then sought a second opinion, and found another medical team who were prepared to think in an innovative and personalised way about her health. Four years later, Nicole has had amazing results! When not in treatment, Nicole is challenging our health system to work collaboratively, think bigger, and be accountable for the delivery of outstanding care to patients.…

1
Tanya Hall - The reality of living with heart disease 32:00

för 3 years sedan32:00

32:00

Tanya is the CEO and founder of Hearts4Heart, which she founded in 2011 through her own experience of living with heart disease. Hearts4Heart is a national organisation supporting educating and advocating for patients living with heart disease. Through Tanya’s commitment and advocacy, Hearts4Heart has grown exponentially and is now seen as an expert voice in the field of patient education and support for heart disease, including arrhythmias. Following the success in Australia, Hearts4Heart has now extended to New Zealand. As the CEO of the only cardiac patient group actively involved in market access discussions with government, Tanya has been successful in re-energising the Australian cardiac community with the patient access to therapies discussion. Early detection and patient access to therapies across the globe is Tanya’s goal. Tanya’s passion to both raise awareness for heart disease and ensure patients have treatment and access to proven therapies has seen her establish relationships with key stakeholders including clinicians, physicians and health industry members.…

1
Agnes Nsofwa and her advocacy for sickle cell patients 49:12

för 4 years sedan49:12

49:12

After Agnes' daughter was diagnosed with sickle cell disease at 14 months old, she learned everything she could and soon discovered the limited treatment options that patients had access to. Since then, she's become an advocate for sickle cell patients. With each person that's diagnosed having such a different experience with the disease, Agnes knew that greater knowledge and information was needed as much for patients as for their families.…

1
Loss, lessons, and a lifelong legacy - Rachael Casella's story 47:38

för 4 years sedan47:38

47:38

With Rare Disease Day coming up on the 28th of February, The Patient Voice Podcast is proud to share Rachael Casella’s story. Rachael is a campaigner and activist for genetic carrier screening, IVF education, and reproductive health. After losing her daughter Mackenzie at just 7 months old to spinal muscular atrophy type 1 (SMA), Rachael realised that genetic carrier screening could have identified the risk of this sooner, if only it had been offered to her and her husband during her pregnancy. She has now dedicated her life - and her daughter’s legacy - to helping other parents access genetic carrier screening. As an investigator with Mackenzie’s Mission, a research project for genetic carrier screening, and author of Mackenzie’s Mission, Rachael is a powerful force in the advocacy space. Her dedication and commitment under circumstances that most find unimaginable, is breathtaking.…

1
Lisa Briggs a voice of change for lung cancer 49:26

för 4 years sedan49:26

49:26

Lisa was diagnosed with lung cancer soon after the birth of her second child in 2014. At the time, she joined a clinical trial to treat her lung cancer. After being aware of the limited options and access to treatments for lung cancer patients in Australia, Lisa began to work with the major players in the field, and advocate for access to medicines. She met with the federal health minister in 2016, created a tip sheet to help patients with their submissions about accessing medicines, and has been influential in driving equitable change to authorisation of prescriptions. Since 2014, Lisa has been a voice of change in the lung cancer community, challenging Australia’s perception of the disease and working to ensure patients get the best outcomes.…

1
Alex Parker shares her Cystic Fibrosis story 43:24

för 4 years sedan43:24

43:24

Alex Parker was born in country Victoria and diagnosed with Cystic Fibrosis at 6 weeks of age. She had a very normal childhood despite all the rigorous health routines to maintain her health. But in her early 20s, her health started to deteriorate and she was in and out of hospital with lung infections. The future looked bleak until she was able to access an innovative new medicine. However, she was only able to access it thanks to the generosity of her grandfather. So Alex and her family worked for more than four years to ensure others like her could access it in Australia. Despite everything, Alex has established a successful career as a commercial advertising photographer, travelling the world to work on major campaigns. She lives happily in Melbourne with her partner Michael, 4 year old daughter Ruby and dog Maxi. Alex is joined by The Patient Voice Initiative Chair, patient advocate Jessica Bean.…

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Agnes Nsofwa and her advocacy for sickle cell patients