Dear donors,

After several years of waiting, I’m delighted to share that the Ministry of Health will be subsidising Risdiplam under the Medication Assistance Fund (MAF). This means eligible SMA patients will have Risdiplam subsidised up to 75%, and if that’s insufficient aid, they may apply for MediFund to supplement the payments. The subsidies go into effect on August 1st.

Because of you, I will not need to apply for MediFund just yet. With the amount we’ve raised and the MAF subsidies, my family will not need to worry for at least 14 to 15 months of my treatment. It’s a huge relief for all of us. Thank you for that!

More importantly, I would like to thank you for spreading my story. I don’t think the Ministry of Health would have included treating SMA adults in MAF’s subsidy scheme if you hadn’t helped us make some noise. As my neurologist told me, it was an uphill battle for my age group. And it’s notable that the Ministry of Health did not stipulate that adults on permanent invasive ventilation are to be excluded from the scheme, which is the case in other developed nations like Canada.

You have given me and other SMA patients a new lease of life. I hope we do you proud.

Cheers,
Sherry

Dear donors,

It’s been quite some time since my last update. I apologise. I’d meant to provide an update in February, but had fallen ill and been hospitalised. Since then, I’ve been trying to get my health to what it was before, and to catch up with work and life.

I’m finally feeling back on my feet and would like to share what I’ve been up to. As some of you might have seen, I recently had an article about my crowdfund campaign published in Mothership. A lot of it rehashes what I’ve written on SMA News Today and elsewhere — my mental health struggles regarding my inability to access treatment, the process of getting this crowdfund up and running, how Risdiplam has helped me, why I believe investing in rare disease patients who are adults is a public good.

But there are some new details, too: namely, that NMP Ong Hua Han had shared my story in Parliament, and my admission into the Game Awards’ Future Class, an international video game industry programme that selects only 50 applicants out of thousands every year. Two things I’m immensely proud of. As I wrote for Mothership, I was the sole Singaporean in my Future Class cohort.

I remain hopeful that I will one day be able to access Risdiplam financially, so that I may continue to excel in my career and rise higher than anyone can expect of me. It’s a very Singaporean attitude, I think. But it wouldn’t be possible without all the support I’ve received — both from my inner circles and from donors.

If I don’t raise enough money to meet my goal for Risdiplam, however, I am trying to remind myself that I will have raised nearly $100,000 for an SMA patient to be treated — even if it’s not me. Furthermore, my efforts were mentioned in Parliament. That’s not so bad.

Until next time. Thank you once again.

Love,
Sherry

Dear Donors,

As promised, here is an update on my condition after my first review post-beginning treatment with Risdiplam.

The appointment happened at 3:30pm on July 20th. When I entered the neurology clinic at KKH, I greeted my entire medical team with nervous excitement — which I suspect we all felt that day and you might feel when reading this update. We were there, after all, to determine if Risdiplam had any effect on me or if, as I was told previously, it would have zero effect.

I’m thrilled to say that, after a full hour of testing with my neurologists, a physiotherapist, an occupational therapist, and a speech therapist, we found Risdiplam to have a significant impact on my strength. My perceptions of improvement were not the result of a placebo at all. Though I’ve not regained the ability to hold my neck up when I sit, I was noted to have a slightly stronger grip and to be much better at swallowing, eating, and speaking. My previous record for drinking the amount of water given to me was 52 seconds. My new record is 16 seconds.

Despite the vast improvement, we are still worried for my future. The 3-month supply Roche kindly offered to me is set to run out at the end of August, and we have no word on whether MOH has reached an agreement with them on making Risdiplam more affordable. So I’m afraid that I must ask for further help in fundraising — though I acknowledge that you’ve done more for me than I’d thought possible as is. Thank you so, so much! I hope my next update will bear more good news.

Love, Sherry

Dear Donors,

Before the update, I would like to sincerely thank every single person who has donated and shared the link to my campaign. From family to friends to colleagues to strangers, I am floored by your kindness and compassion. 

All that being said, we are unfortunately still 99% away from the goal of $375,000 after launching the campaign in March. But there’s good news behind the bad news: after noticing the slow progress of the campaign and discussing the situation with my neurologist, the pharmaceutical company behind Risdiplam, Roche, has gifted me a 3-month supply. My first dose was taken on May 27th, and I’m already feeling minor but significant improvements in my swallowing and speech. To rule out that I’m experiencing the placebo effect and to ensure I’m progressing well, I will be seeing my neurologist in late July — after which I will provide an update when I’m able.

For now, the campaign will continue to run. The slow progress is admittedly worrying, but I am urging you — as well as myself — to remember that even if I don’t raise at least 50%, the money will go towards the next SMA patient who fundraises with Ray of Hope for treatment.

Thank you all once again!

Love,

Sherry