Miscellaneous

Repeat from last week or until no longer relevant or until I delete it:

Debby M.: Reminder that we will soon be setting up for the auction, so hopefully you have begun sourcing your auction items. We will have tax receipts available for sponsorship.

Amanda: You can bring items for the auction baskets to the morning meetings. She is ready to pick them up and begin organizing.

Sam: Two events:

Building Pathways for Hope, Pathways Clubhouse Gala Dinner May 2 at 5:30 p.m. at the River Rock Theatre

Zoom Meeting Rules

THE LINK TO OUR THURSDAY MEETINGS WILL NO LONGER BE EMAILED BUT ACCESSED THROUGH THE LINK BELOW.

Rotary Club of Richmond Sunrise is inviting you to a scheduled Zoom meeting.

Topic: Rotary Club of Richmond Sunrise's Zoom Meeting
Join Zoom Meeting
https://us02web.zoom.us/j/7359371916

Meeting ID: 735 937 1916

1) Mute your microphone if you aren't already muted. Background noise is distracting.
2) If you are not engaged in the presentation, turn off your camera.
3) Chat function should only be used to address the speaker, not for Club member remarks during the presentation

4) Unmute when harassing the Sergeant at Arms or taking your turn during Sergeant at Arms.

5) Don't respond to any anonymous request to invest $354,000,000.00.

Please direct any questions to the President or a board member of your choosing and we will discuss any and all questions or concerns during our board meeting. Also please refer anyone who may be interested in attending a meeting or joining the club.

INSPIRATIONAL QUOTE

From Helen Barry via Marg: “Love your family. Spend time. Be kind and serve one another. Make no room for regrets. Tomorrow is not promised and today is short.”

VISITORS

Michelle Bassi and Andrew (Susan’s brother)

ANNOUNCEMENTS AND

CLUB BUSINESS

Golf Shirts: Thanks so much to Debbie S. for organizing the purchase and distributing the shirts this morning.

Debbie M. Auction Update:

Givergy instructions were emailed. You can start entering your items and contact Eleanore or Chris with any questions.

The template for labelling items was emailed. These should be attached to the items when brought to the Ballroom on May 2.

Marg: Wine is being collected at the morning meetings. You should bring two bottles which will be distributed to the wine wall, wine fridge, and auction baskets. Please put your name somewhere so Marg knows they are from you.

Sandra: Ticket sales are being monitored. We can pay by cheque, cash, e-transfer or Shopify (the latter should be available next week). If you have people sitting at your table, collect your cheques and send them all together to Sandra.

SERGEANT At Arms Tidbits

Garth cleaned up in Whistler and went to Abbotsford.

Gordon, after hearing Michelle’s story, sympathizes, but can’t imagine what it must feel like and wishes Michelle the very best. (And to everybody surprise Gordon claimed he was speechless!)

John had a friend whose child had MS and the mom became a strong advocate for the child. Recently, John went to the mom’s funeral, attended by so many admirers for what she had done for her son and others. He draws our attention to the nefarious club members on the front page of the Tsawwassen magazine – Melinda, John and Heath. A follow up on the dog with the broken leg, they’re back to the vet today.

Chris M. announced that on Sunday, the family welcomed Eleanor Ryumi (beautiful dragon), born to Olivia and Matt. The household is a little sleep deprived, especially the dog who gets up throughout the night every time anyone else does. The cat sniffs but is afraid of this new human being.

Sandra had a wonderful break from work in Mexico, 17 days of reading, lying on the beach and going for walks. It was very hot, feeling like more than 35º. At the airport she felt the handle of her suitcase was very hot and sticky, so she wrapped tissue around it. When they got home yesterday, she received a surprise Amazon delivery, a silicone luggage handle from her sister.

Marg says canning season has started with pickles and asparagus, which you can find at $2.99 down from $8.99.

Peter was in Seattle at PETS last week, learning to be a president. He didn’t pass, but it was an amazing, wonderful experience. He was proud that our club shines, as we do so many things others aren’t doing including our weekly bulletin and board minutes. We know what’s going on in our club. He was impressed that Rotary raises so much money, and they’re currently working on a slush fund for emergencies, a goal of $2.25 billion and are almost there. When you get your chance to go to PETS, you must take it.

Kal sends apologies from Dalbir who was at the Madonna concert and got home at 1a.m. He thanks Michelle, for her story, and for making him look good. A shout out to Arshdeep Bains who made the Vancouver Canucks team.

Debbie M. is busy working on auction stuff and juggling everything. Her daughter has been an advocate for her husband who has a rare cancer and knows the blood sweat and tears that goes into the quest, how tiring and heartbreaking it can be.

Susan was here in person as she is on holidays this week because her brother Andrew is staying with her. She hasn’t seen him for a year and a half. They are having fun and enjoying life. Her anonymous friend has already given lots of auction items for us and Susan brought her two bottles of wine today as she won’t be back in person for a while.

Larry had a very bad fall, getting ready for work, in the dark, kicked his cane, fell into a cabinet then into a wall and finally hit the ground, which Steve says shook the whole house. Result - two broken toes and feeling it’s a blessing that he didn’t hit his head. He will see the surgeon in a couple of weeks. but no more surgeries. His surgeon has taken him on as a crusade, and it’s so nice to feel his head again and know that he still has one.

Micheal has four children, and even if something small happens, he is so worried, so he thanks Michelle for her presentation. He missed last week as his wife wasn’t feeling well and he had to drop his son off in school. He is missing his daughter who is still in India, but the family has a little more time for having fun.

Pat didn’t get to go to PETS and had to do it online due to the pandemic. There is a lot to learn. Today she is going to the dentist, the same one as Marg has – he’s great.

Debbie T. says she advocated for her kids too, forming a kitchen table group to figure out what was wrong - ADHD. The power of mother bears! She has more auction items from the family that had a sister hoarder and needs to go through more boxes.

Bobby’s son Ethan was premature, at 1lb 6oz, and was in neo natal care for 3 months, in Children’s Hospital. He didn’t appreciate people giving negative advice and stories. His wife had a sinus disease for 8 years, took lots of medications, and finally found a specialist at St Paul’s. But the wait time was two years, so they did surgery privately at Cambie Surgical and all the issues are gone. Riverside Hall and Ghirra family had Canucks Club 500 tickets in the arena, which were $239/ticket for meal and game, now cost $600/ticket – so they’re not getting any.(If the Canucks keep losing the price might drop again.)

Debbie S. got a text from Melinda, who is so sorry not to be here, but just woke up as her sleep schedule is messed up after returning from Australia. Debbie was in Palm Springs, and it was great!

Bob knows Chase has the strongest parents in his corner. Thanks to Debbie for arranging the golf shirts. Bob just chilled at home this weekend.

Meanderings

So you think you know someone who likes spicey foods. Well ask them to try Pepper X. (not previously known as pepper Twitter.). This is from the latest Scientific American.

A new world record holder has entered the field of hot peppers: Pepper X. This proprietary pepper, bred by Ed Currie, was recognized in October 2023 by Guinness World Records as the hottest pepper ever independently tested. Currie is one of the few people to have tried pepper X raw. By all reports, the taste test involves a burning sensation followed by several hours of intestinal cramping. With a spiciness level of 2.693 million Scoville heat units (SHU) on average, Pepper X handily unseated the previous hottest pepper on Earth, the Carolina Reaper - also bred by Currie, who founded the PuckerButt Pepper Company ....... (For comparison jalapenos reach 2,000 to 8,000 SHU.)

Sounds like Pepper X is spicy enough to pucker Peter Pipers butt.

After listening to our speaker I am adding a description of Rare Disease Week/Day and a link if you want to learn more.

Rare Disease Week, held on the last week of February each year, is the lead in to World Rare Disease Day (February 29th). It is an annual observance to raise awareness for 400 million people affected by rare disease globally.

February was picked for this observance because it is the rarest among months – it is the only month that does not have 30 or 31 days. In most years, World Rare Disease Day falls on February 28th, but this year, a Leap Year, it is on February 29th. It’s extra rare.

Participating in Rare Disease Week is an important way to raise awareness and advocate for those affected by rare diseases. It’s an opportunity to educate others about the challenges and needs faced by our community, including finding better diagnosis, treatments, and social support.

World Rare Disease Day - Global Genes

SPEAKER

Michelle Bassi, mother and rare disease advocate.

Michelle resides in Ladner with her husband Kam and her two sons, Kaiden, 12, and Chase, who recently turned 10. When Chase was 18 months old, he began having terrifying tremors. Over the next few years, Michelle embarked on something she refers to as a diagnostic odyssey.

During the first years of Chase’s life Michelle’s intuition told her there was something wrong, but the doctors she visited has no answers. She started to make videos and began her diagnostic odyssey, the time from when symptoms are noticed to when a diagnosis is found. As Chase’s tests were coming back normal, a specialist finally applied for ‘whole genome sequencing’. On December 24, 2017, Chase was diagnosed with SLC6A1, a rare disorder that causes seizures, severe movement and speech disorders, and intellectual disability. Nothing was known about the disease and Michelle felt hopeless until, on a trip to San Diego, she met a whole community of people also seeking answers. She began to support the efforts in the USA, hopeful to find a drug that would address the underlying cause, not simply mask the symptoms. Her search brought her in touch with a clinician, and a drug apparently safe and being trialed in New York. Pharmacare has not supported the treatment, after much documentation. However, the American pharmaceutical company has offered to support them, and treatment should begin soon.

Chase is a determined, funny, kind, enthusiastic little boy who loves music, watches sports, loves school, and wants to be included with his peers and his big brother. Although he struggles with learning, he can remember Canucks scores. Both Chase and his mother are relentless in helping Chase be the very best he can be.

Rare Disease Day is on Feb. 29, raising awareness and generating change for the 300 million people worldwide living with a rare disease, and for their families and caregivers.

upcoming events

Building Pathways for Hope, Pathways Clubhouse Gala Dinner May 2 at 5:30 p.m. at the River Rock Theatre

Next years Gala is Friday May 3rd, 2024.

TODAY'S CHUCKLEs

40 Funny Emoji Copy and Paste | Desalas Template

From Dick Wagner once again.