Building a Resilient Family in the COVID-19 Pandemic
We are just starting out with COVID-19, it is a marathon and not a sprint. It is something that we will have to endure for another 1-3 years and perhaps longer. The Covid-19 pandemic has significantly impacted all of society. Most of us are struggling with many different emotions and uncertainties. We have a deep sense of loss of the present realities we had taken for granted and the future hopes we have dreamed of. This is especially true of younger persons and those in training.
General Guidelines for People with Spinal Muscular Atrophy or SMA and their Caregivers in the Coronavirus Pandemic
In such a difficult time that is unlike anything we have ever lived, simple guidelines are needed.
Information saves lives. Read, learn and share!
WeCareJourney would like to thank Instituto Vidas Raras for their great work and allowing us to adapt the Guidelines for local use.
Zolgensma to be made available globally under a managed-access programme
Zolgensma akan disediakan di peringkat global di bawah program akses terurus
- Published 21 December 2019
Roche announces global pre-approval access/ compassionate use (PAA/CU) plans for Risdiplam
Pengumuman Roche mengenai akses global pra-kelulusan / pelan penggunaan ‘Compassionate Use’ (PAA/CU) untuk Risdiplam
- Published 15 January 2020
TheStar, Dec 03 2019 - One Step Forward By Ministry Of Health For SMA Patients
"SPINAL muscular atrophy (SMA) is a rare disease that used to lead to no other outcome but premature death. And before that death, children would suffer dreadful deterioration of the ability to move, eat and breathe. In a majority of cases, that traumatic end used to come before two years of age; SMA was known as a major cause of the death of babies under that age.
However, with advancements in science and medicine, the outcome for SMA patients has dramatically changed. Today, there are two drug therapies that can stop this disease and save lives. Lives that carry a huge amount of potential if one were to look at the achievements of those with SMA who have survived to excel in the arts, entrepreneurship, academia and many other fields."
TheStar, Oct 08 2019 - Can we share some money to save some lives
"With Budget 2020 looming around the corner, perhaps some of our tax dollars can be shared to save the lives of those born with rare disorders.
PARLIAMENT has resumed once more, and we know that this means that Budget 2020 is around the corner - especially considering that it's now October.
I am sure that many of us will be looking forward to Budget Day to see what subsidies, tax breaks and other 'goodies' will be announced to make our lives easier. I know that I will be.However having said that, I know that I'll also be hoping that the government will be announcing measures that could ease the lives of Malaysians who face real challenges on a daily basis, an example being Malaysians with rare medical disorders."
MalaysiaKini, Sep 02 2019 - Budget 2020: Will voices of Spinal Muscular Atrophy patients be heard?
"On Aug 8, members of the public were invited to contribute their ideas and proposals for the preparation of Budget 2020 which will be tabled on Oct 11, through a special website.
Finance Minister Lim Guan Eng said this would enable all segments of society to submit views in line with the government’s efforts to build the nation and prosperity of the people."
August is SMA Awareness Month
Hey, do you know that August is declared as SMA Awareness Month worldwide?
As this month is special to us, we would like to share many facts and relevant information about SMA to spread awareness and increase public’s knowledge on SMA and our community. Stay tune to find out more. Keep updated on our campaign to make sure you don’t miss anything.
WeCareJourney Sharing on SMA with Orthopedic Department of Hospital Universiti Kebangsaan Malaysia (HUKM)
In our journey for acknowledging and fight for SMA families’ rights and access to medication, WeCareJourney took another step by approaching doctors to acquire their supports. WeCareJourney was invited by Ortophedic Department of Hospital Universiti Kebangsaan Malaysia (HUKM) for a sharing session on SMA. The sharing session took place at Ortopedic Department on 11 July 2019. It involved a group of doctors, specialists and trainees from Orthopedic Department of HUKM
International Experience Exchange with Patients Organisations (IEEPO)
"This conference was my first introduction to personalised healthcare and got to understand its transformative impact on the way healthcare is delivered and why it should matter for patient groups. I learnt also on the shift in patient participation in healthcare, where patients can be true collaborators with pharma, holding the key to unlocking the full potential of healthcare innovation. There were a number of breakout workshops for us to explore the impact of policy, data, and patient partnership on personalised healthcare and drug development.
However, let me instead share more on those activities that offer a more immediate and direct relevance to families with SMA and rare diseases in Malaysia".-Edmund
Phar-East Conference 2019
The Phar-East conference held in March 2019 is a leading pharma and biotech conference for Asia.
Being an industry conference, it was interesting to be invited back again to participate in a panel
discussion, and this time to also present on the opportunities and challenges of a stakeholder
engagement journey from a patient advocate perspective.
I spent the large part of the conference attending various talks on immunotherapy, clinical trials,
pharma 4.0, market access and pricing, regulatory affairs; and one topic which I attended for the first
is around biotech investments.
Here are some of my impressions:
World Orphan Drug Congress USA 2019
WeCareJourney’s founder Edmund was invited to participate at the recent World Orphan Drug Congress USA (“WODC USA”) 2019. The WODC USA focuses on the most pressing challenges and opportunities to bring rare disease therapies to patients faster, and brings together a global gathering of 1,200 leaders in orphan drugs from 50 countries, featuring over 135 presentations covering all aspects of orphan drug development and rare disease research.
Here are some of his takeaways from WODC USA.
Do you know that rare disease day is on the last day of February? Many of you may not be aware of how many patients and families are affected by rare diseases and their impact on Malaysia.
The Health Ministry has been urged to expedite access to a new drug therapy to treat those affected by spinal muscular atrophy (SMA), especially children, said the founder of NGO WeCareJourney Yap Sook Yee.
Open Letter to PH Government: “Appeal for increased support for rare disease treatment in Budget 2019”
With Budget 2019, the Government can demonstrate equity by expanding treatment for rare diseases, and fairness and equality by funding SMA orphan drugs. This paves the way for children with SMA to get lifesaving and lifechanging medicines like Spinraza. We also look forward to promising new SMA orphan drugs that are expected to be approved for use in the near future.
Do you know? 1 in 50 carry the defective SMA gene.
SMA is a disease that robs people of physical strength by affecting the motor nerve cells in the spinal cord, taking away the ability to walk, eat, or breathe. It is the number one genetic cause of death for infants.
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