Rare & Share Dinner: Experience The Daily Realities Of Living With Spinal Muscular Atrophy (SMA) With This New Menu

PUBLISHED February 28th, 2024 06:00 am | UPDATED March 12th, 2024 02:01 pm

Imagine a life where the simple acts of brushing your teeth, having a meal, or taking a breath become progressively challenging. This is the reality for those living with Spinal Muscular Atrophy (SMA), a rare genetic condition that silently erodes autonomy and vitality. Without early intervention, SMA leads to a relentless weakening of muscles, impacting daily activities and, in severe cases, threatening life itself. While SMA is typically identified during childhood, it can manifest at any age depending on its type, significantly impacting the quality of life for both the individual and their loved ones. 

Although there is no current cure for the condition, it is the most treatable muscular dystrophy condition. As Associate Professor Stacey Tay shared at a recent press event, with early diagnosis and treatment, a person living with SMA can continue leading an active and independent lifestyle. However, even with accessible treatments and care, the current healthcare funding in Singapore still falls short.

This is why the multinational biotech company Roche has joined hands with Muscular Dystrophy Association Singapore (MDAS) and European restaurant Atout to present the first-ever Rare & Share Dinner in Singapore to raise awareness about SMA.  In the eat good, do good campaign, the portion of the dinner proceeds also go towards supporting SMA care programs with MDAS.

The Rare & Share Dinner

 

“Empathy begins with understanding life from another person’s perspective.” Step into the life experiences of people living with SMA at the Rare & Share Dinner. Starting 29 February 2024 – the rarest day of the year – in line with the global Rare Disease Day, Chefs Azrin Rahman and Patrick Heuberger from Atout craft a four-course menu that mirrors real-life challenges encountered by people living with SMA.

The journey of empathy starts with a trio of amuse bouche, which includes a Gruyère Cheese Gougère Puff with bits of smoked salmon and Crispy Iberico Pork Cheeks & Trotter “Cromesquis” topped with Apple Gel. But what catches our eyes is the Green Gazpacho served in a syringe. Since chewing vegetables is a challenge for weakened mouth muscles, the Chefs have cleverly turned vegetables into cold soup. And the syringe? A reflection of their constant visits to the doctors.

The second course features the delectable Foie Gras Royale, which sees foie gras folded into eggs and adorned with black winter truffles. Its velvety chawanmushi-like consistency creates a sensation that delicately melts in the mouth, providing a glimpse into the culinary journey experienced by individuals grappling with the challenges of SMA, as their condition advances. Try eating this delicate dish with a unique oversized weighted spoon (500g) simulating the daily struggle faced by those with SMA . It’s a poignant reminder that what may seem routine to others can pose a significant challenge for those navigating life with SMA, transforming the act of eating into a profound exploration of resilience and adaptability.

The main course is a fall-off-the-fork Wagyu Oyster Blade, which is slow-cooked for 24 hours. Just as this Wagyu delight falls effortlessly off the fork, it symbolises the round-the-clock care and meticulous attention and support required by individuals living with SMA. Complementing the tender Wagyu is a velvety celeriac puree, chosen not just for its gastronomic appeal, but to mirror the preferred soft textures that individuals with SMA find comfort in when savouring their meals.

The meal rounds off with Lemon Vacherin Glacé, a tribute to Chef Patrick’s Swiss-French childhood. Nestled between vanilla meringues is a generous serving of invigorating Amalfi lemon sorbet, crowned with artfully crafted swirls of tangy berry coulis. Beyond its delectable flavours, this meticulously composed dish symbolises the interconnected layers of community support that form the backbone of care and empathy in our society. Much like the harmonious layers of the dessert, these supportive roles intertwine, creating a vision of a future that is both beautiful and hopeful where individuals living with SMA can access timely treatment, improving their quality of life. Indeed, a sweet ending to the gastronomic journey of empathy.

Rare & Share Dinner is available on 29 February 2024 and all Wednesdays in March (6, 13, 20 & 27 March) from 6pm at Atout, located at 40C Harding Rd, Singapore 249548, p.+65 8799 4567. The 4-course dining experience is priced at S$138++ per pax.

Make a difference; make your reservations here.