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Blu
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Interest Gauge: Charity Auction / Raffle for Meat Fight

by Blu Wed Apr 14, 2021 11:29 am

Dear Racketboy Community,

I've been on-and-off the forums for a while, and I'm sure you'll understand that life has gotten in the way with being more active. But, I have some pretty big news that I'd like to share with you.

I have Clinically Isolated Syndrome (CIS). Hot off the presses and formally diagnosed just at the end of March. Oftentimes, this is a precursor to a formal Multiple Sclerosis (MS) diagnosis. MS is a disease where the immune system recognizes the brain as a threat, and attacks the myelin coatings within the brain. It can impact bodily function, cognition, and cause a wide range of disability. It is a lifelong disease.

This past fourth of July, I experienced some tingling sensations in my left arm. At the time, I reached out to my physician and asked what this might be. Given that I was pretty active, we thought it most likely was a pinched nerve in my back and/or carpal tunnel. The tingling went away after some time passed. But, shortly after the new year, the tingling returned, but had spread to my left leg and head. Immediately I reached back out to my doctor and was referred to a neurologist who specializes in Multiple Sclerosis. She ordered an MRI, which I did at the end of February. The MRI came back with several lesions on my brain, but thankfully nothing in the brain stem or spine.

I took a great deal of comfort in my neurologist's expertise. She has over 25 years in working exclusively with MS patients. I have no idea how nurses and physicians hold on to their optimism in a disease that is wildly unpredictable on a patient-to-patient basis. They are simply amazing people. With their care and guidance, I have become feeling more reassured and in a position to navigate my way through my diagnosis.

The lesions I have are on the white matter, and appeared similar as those typically present in MS patients. To rule out mimics, I did a load of blood tests, and a lumbar puncture to draw cerebrospinal fluid samples. This was by far the worst procedure, and I just was unlucky to have a nerve touch/get sucked into the needle. My whole right of the body felt like Thor was calling Mjölnir and all of its lightning into me. Definitely worth laughing about now, but good lord did those few minutes suck. I am in awe that some patients with certain types of blood cancers undergo that procedure multiple times. Folks who have to endure spinal taps on a semi-regular basis have loads of courage.

It goes without saying that I'm incredibly privileged in all of this. My disease and symptoms are mild. Aside from some tingling and burning, things are going okay. My current level of disease appears to be "invisible" to passerby's. I'm still temporarily able-bodied, and I have access to a great team of physicians.

I mention this because health care disparities for diseases like this certainly exist for people in our country and around the world. In two decades, treatment has exponentially improved for MS patients. It's truly a marvel of science to see how quality of life for MS patients by-and-large has improved. But, access to those medicines however is expensive, which may not surprise you. So, I want to call further attention to the matter and do what I can to help a community that I now find myself in. Research can help make generic versions of existing treatments more widely available, and greatly reduce cost to make them more affordable. The National MS Society also assists with outreach and patient advocacy where it is desperately needed.

I'll say that none of this was what I was expecting when I was rounding the corner for birthday #35. I've gone from initially feeling like this was a death sentence to feeling positive and cautiously optimistic to do my best to "do this thing."

Right around my birthday I'll begin a disease modifying treatment. I'm optimistic (and my caregivers are too) that this treatment will help slow the progression of the disease, and thus help prevent further disability and symptoms. It will weaken my immune system; it's my immune system after all doing this. This may carry a risk of infections. These are calculated risks that provide a high ceiling of benefit.

But through all of this, I'm blessed to have the love of my friends and family who've helped us through the ups and downs of the past two months. I'm simply left without words how thankful I am. Currently, my outlook is to take it day-by-day. I think that's the best I can do to keep perspective. How my body responds to treatment, how future MRI's look, adopting a healthier diet, regular exercise, taking vitamin D every day for the rest of my life -- all will play a role into how this tale plays out.

----

So, if you've read thus far, are you curious how this information involves you? Well, I was actually just accepted into this really unique and cool program called Meat Bike. It's part of a larger organization, Meat Fight, (https://www.youtube.com/watch?v=UylOR2N ... ceLaussade) a Texas-based 501(c) that helps provide fundraising for people living with Multiple Sclerosis. I'm really excited because I'll be able to find a community and also keep myself healthy, which will be really important going forward as far as my disease is concerned.

Being accepted into this program means:
* I'll commit to a 100km / 100mi bike race in the next six months. This will likely be a Bike MS - series bike race.
* I'll commit to fundraising at least $200 to help pay it forward for future applicants to receive a bike.
* Meat Bike will outfit me with the bike, gear, and training to train and compete in an endurance bike race.

Here's where you come in! I want to take a creative approach to fundraising. I still love video games! And what better way than to incorporate video games in a charity auction / raffle for the National MS Society. I have some wicked games, but I'd be willing to part with them to raise money for charity and this organization. I obviously wouldn't expect folks to contribute items of their own, but I know how we've done charity auctions in the past and we've had really good results.

So, I'm just curious if folks might be interested in doing another event and raise some money for the National MS society and Meat Bike! What are your thoughts?

I can have more details come forward here in the next few weeks, just let me know!

Sincerely,
Blu
Last edited by Blu on Wed Apr 14, 2021 1:44 pm, edited 1 time in total.
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marurun
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Re: Interest Gauge: Charity Auction / Raffle for Meat Fight

by marurun Wed Apr 14, 2021 11:42 am

I think this should be our annual RB Charity Auction (we didn't do one last year, and I can't recall the year before). This is a great and important goal. My old Japanese teacher from high school has MS and my parents lost one of their good friends to MS many many years ago. I did the MS Read-a-thon regularly as a kid.

Calling all Ziggy and Anapan! Are you guys interested as well? You've both been strong supporters of RB charity drives in the past! I have some ideas of my own to help out as well, so let's see what we can throw together with Blu.
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Re: Interest Gauge: Charity Auction / Raffle for Meat Fight

by ElkinFencer10 Wed Apr 14, 2021 1:49 pm

marurun wrote:I think this should be our annual RB Charity Auction (we didn't do one last year, and I can't recall the year before). This is a great and important goal. My old Japanese teacher from high school has MS and my parents lost one of their good friends to MS many many years ago. I did the MS Read-a-thon regularly as a kid.

I second this. Definitely do our charity auction again and have the proceeds go to this. My old principal - the one who hired me though she works at a different school in the district now - has MS, and I was always in awe of how she could continue to run a high school with the disease. MS patients are tough as nails, and that's definitely a cause that we should support in whatever way we can. I've got a few spare games I can contribute to the cause.
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Ziggy587
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Re: Interest Gauge: Charity Auction / Raffle for Meat Fight

by Ziggy587 Wed Apr 14, 2021 5:37 pm

Blu, I'm very sorry to hear about your diagnosis. But I am glad that your prognosis is good.

I am DEFINITELY down to help support a charity auction! I have already thought of a few great items to donate, and I will probably think of more. Blu, is there any specific time frame we would have to hold an action? Or could we have it at the end of the year, when we normally have it?
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Blu
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Re: Interest Gauge: Charity Auction / Raffle for Meat Fight

by Blu Wed Apr 14, 2021 10:45 pm

Thanks all for the replies. You are amazing and it's so great to hear stories of support and interactions with people living with MS.

Ziggy, to answer your question, I remember we've typically held the charity event around December. If there's some flexibility on date, I'd appreciate that. I think I'd like to do the fundraising and training and let folks be alongside as part of my journey to this race. I was accepted into the program this week. Right now, I have about six weeks to pin down a bike race. Then from the moment that I've been given the bike, I'll need to cross the finish line in a race within six months. I'm looking to shoot for an August or September Bike MS event to start fundraising for. Would a 3-5 month window be doable?

My intention is to take a good deal of my collection and make it available. Format wise, I might consider a few raffles that could be fun and bring people together. But make the bulk of the items that I'm offering be part of an auction. I'm totally open to new ideas that might change things up!

I discussed this with Marurun, but I am happy to take lead on coordinating and organizing a lot of the logistics. I want to be respectful of everyone's time and make sure the event runs smoothly. All in all, I'm just really appreciative of the willingness and kindness this community continues to show. It really means a lot to me. <3
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prfsnl_gmr
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Re: Interest Gauge: Charity Auction / Raffle for Meat Fight

by prfsnl_gmr Wed Apr 14, 2021 11:32 pm

I am sorry to read about your diagnosis, Blu, but happy to read that you are taking it so well and making it a source of giving and inspiration for others. I am happy to help with this too.
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Re: Interest Gauge: Charity Auction / Raffle for Meat Fight

by stickem Thu Apr 15, 2021 12:38 pm

Sorry to hear of your condition Blu. I have a few things for a charity auction. Was going to put it in the community give a way, but this would be a better option.
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Re: Interest Gauge: Charity Auction / Raffle for Meat Fight

by SamuraiMegas Thu Apr 15, 2021 2:15 pm

I'll keep an eye out so I can hopefully pick up a few things for the charity auction donations.
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marurun
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Re: Interest Gauge: Charity Auction / Raffle for Meat Fight

by marurun Thu Apr 15, 2021 3:13 pm

I'm thinking about doing a screen and case mode for my old GBA SP AGS-001 and installing a new modded battery and auctioning it off.
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Re: Interest Gauge: Charity Auction / Raffle for Meat Fight

by Note Thu Apr 15, 2021 5:29 pm

Hey Blu, also sorry to hear about your diagnosis but I'm glad that you're approaching every day with a positive outlook. The end of 2020 is also the first time I experienced a neurological issue which also felt like a painful tingling sensation and it totally caught me off guard. One of my doctors thinks it stemmed from a long haul Covid infection. I've had a few appointments with neurologists but didn't receive a specific diagnosis yet. Have an appointment in late June with a rheumatologist, so hope to have a better answer at that time.

Wishing you luck in your recovery and I'm glad that you're being proactive about your diagnosis.

In regards to the charity auctions, I'd like to participate and I'll be on the look out for any items I can donate to help raise money.
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