The Circle of Life: A Tale of Two Fundraising Stories.

Captain Sir Tom Moore has raised nearly £33m for NHS Charities Together and the funds are going to the frontline workers who are giving so much during the COVID-19 pandemic. He initially set himself the goal of £1m, nevertheless people responded beyond expectations and their generosity helped him achieve a much higher feat.  

Awareness, endearment, relatability, and selflessness have helped his efforts: a World War II veteran walking 100 laps of his garden before reaching the venerable age of 100, helping his nation one more time at a time when one of its most revered institutions is under siege and those who can support it can do so from behind closed doors. 

For the past five months, my heart and mind have been captured by the story of Robert Grabazei, a seven-month old baby born in October 2019 with Spinal Muscular Atrophy (SMA) Type 1, a genetic disease caused by the inadequate production of motor neurons, which will take his life before he reaches two and has the chance to genuinely put a foot in front of the other. His life can be improved and saved with Zolgensma, an innovative gene therapy treatment which is at the moment the only chance for babies born with this disease. A one-shot treatment, Zolgensma costs £1.7m. 

I have watched the funds raised for him like a hawk ever since his diagnosis last December and I have been impressed with people’s response. Several weeks ago, Robert’s family raised just over 70% of the funds they need to afford the treatment. I hope the outstanding amount (£0.5m) is arrived at as soon as possible: babies diagnosed with SMA 1 lose the motor neurons they were born with every. single. day. 

Similar to Captain Tom Moore, I believe endearment has played a significant part in people talking about and donating for Robert. I wonder if higher awareness of SMA 1 and its devastating effects would have helped this fundraising effort go further, faster. His parents will undoubtedly succeed in raising the funds they need to save his life, however a longer-term solution is needed for every 1 out of 6,000 – 10,000 babies born globally with SMA 1 who come into this world with a significant price tag on their life and who need these funds within their first six months in order to stand a chance. 

At this point, I only wish Captain Sir Tom Moore could come out of retirement, walk a symbolic lap of his garden and help raise the final leg of the amount Robert needs to take his first steps. I feel like this little guy could use a hero and who better at this moment than a man who has seen, done and achieved so much. 

About SMA 1: Spinal muscular atrophy (SMA) is a group of genetic diseases that cause weakness and wasting in the voluntary muscles of infants and children and, more rarely, in adults. It’s one of the most common genetic conditions affecting children (est. one in every 6,000 to 10,000 babies worldwide is born with SMA).

In more than 95% of cases, SMA is caused by inadequate production of a protein called survival motor neuron (SMN) protein that is essential to motor neurons.

There are four different types of SMA. The classification is determined by the developmental milestones the child has hit by the time of the disease onset. Type 1 (severe) SMA is the most severe and the most common. It is usually evident at birth, or in the first few months afterwards (0-6 months). Symptoms include floppy limbs and weak trunk movement. Children with this type usually have very limited ability to move, a hard time feeding and swallowing, holding their head up, and breathing. Type 1 SMA progresses rapidly, with the weakening of muscles leading to frequent respiratory infections and usually death by the age of 2. Infants with SMA type 1 can never sit. (ref. Cleveland Clinic.org).

“It’s not ok to be selfish all the time. “

“It’s ok to be selfish”, he said. 

“It’s not ok to be selfish all the time”, I wish I would have said. “You live in a great city; you have a good head on your shoulders. You’ll likely grow in your job over time and have a family if you’re lucky. At most, you’ll need to look after three more people in your household all your life. 

At some point, all the needs you’re working towards now will be met. And if at that point, you won’t learn to look towards others and offer them a hand, I’m afraid your selfishness is not going to make you richer, only a lot poorer. 

There are 366 days in a year and any of these may be used to run an ad.

Browsing through the CNN website, I came across a story reporting that ABC Universal did not run a TV ad for female postpartum pads on the evening of the 2020 Academy Awards. The network labelled the ad “too descriptive and too graphic”; although it asked the manufacturer Frida Mom to edit the ad, these edits were not made and the ad did not consequently run. 

Frida Mom posted the ad on YouTube introducing it as “the ad that did not run during the Oscars”. There is a slightly emotional introduction to the video which almost begs viewers to shed a tear at the fact that the TV network refused to run its work on the night of one of the most televised events in the world. 

I do not find this to be fair.

There are 366 days in a year and 365 other days when Frida Mom could have bought airtime and placed the ad on the network. On any of those 366 days as well as on the night of the Oscars, they could have run with an edited ad and directed viewers to their site to show the entire creative spiel to their direct audience (moms to be, recent moms and their partners). 

It might not have been what they wanted, but it would have got them on TV and generated all this buzz in a less defensive, tear-inducing and victimising manner. Maybe that there were things that the Academy Awards could have done differently and better this year, but refusing to run an ad for postpartum pads with the whole world watching is not to me one of them. 

Hot Stone London, yeah – it’s pretty cool.

I paid a visit to Hot Stone, a Japanese steak and sushi bar at 9 Chapel Market last Friday, prompted by their deliriously sizzling Instagrams and the memories I have of other Japanese restaurants* in London and New York that have delighted and heightened my senses over time. 

In I went for lunch, with a hunger that said I had not had breakfast and an appetite that wanted to try everything on the menu. With the restaurant just open for lunch and filling up with bookings and walk-ins fast, I had the privilege of choosing a table at the front of dining room, although several other guests, in particular two posh lads, let’s say, proved very picky about where they wanted to sit, changed tables a couple of times until they sat close enough to talk straight into my ear and the manager was more than willing to oblige – them.  

Luckily the manager and the waiting staff were very obliging about my entire experience as well, from taking my order and explaining the ingredients of every dish that arrived at the table, to grating fresh Japanese wasabi under my nose and serving me my drinks. On this occasion, I ventured out and ordered some Sake, which promised undertones of strawberry and earthly flavours. I did not sense any strawberry undertones or earthly flavours in my clear glass of Sake, a fact which cemented my instinct that spirits are actually my drink of choice. 

Hello, then arrived the dishes I had ordered – from the Seared Salmon, to the Crunchy Sushi Roll, to the 9 Chapel Market Roll. All made with perfectly cut fresh ingredients and layers and layers of fresh rice and fish, served with fresh soy sauce and freshly grated Wasabi root, mouth-watering and full of flavour. I don’t know what it is about well-crafted Japanese food – every time I have it, visions of Uma Thurman, Kill Bill and Quentin Tarantino flood my mind. I think that is a good thing.  

The Crunchy Sushi Roll competed closely with the eponym dish at Salt + Charcoal, nevertheless it is the sauces, the crunchiness and the actual Williamsburg-nestled location of the latter joint that will keep it in the poll position of my Japanese digs forever and for always and Hot Stone as a really worthy deputy winner. 

Hot Stone is located at 9 Chapel Market, London, N1 9EZ. 

*Akira, Japan House, 101 – 111 Kensington High Street, London, W8 5SA, and Salt + Charcoal, 171 Grand Street, Brooklyn, New York, 11249. 

A morning at.

I had the chance to spend a free morning at Jolene’s today. Go in, order randomly off the menu, browse Monocle, pretend I am working on something meaningful on my laptop, but mostly stare at the ceiling and at the people around me and chill out. I have wanted to do this for some time, especially as I have been driving by early in the morning or late in the evening on my way to – and back from work.

I am glad I have been able to take a break – on this cold Thursday morning in November.