Did you miss me ?! I mean I’ve been gone a really really long time … Did you even notice I was gone?! ….. I’ve packed a lot into those months but that will have to wait for another post. Late last year as I pondered the existence of this blog, for lack of a better word (diary might be a better fit), I realized if I’m not going to use this thing as my “creative outlet” like originally intended (and I’m still holding out hope that I might) I’ll use it to spotlight organizations and groups that I’ve discovered over the years that are making a huge difference in this world and could use a boost. Not saying a blog posting by me here would boost anything, but at least I can say I gave it some spotlight if only for a small moment in time and with the tiniest bulb out there. What they do with it after that … well that’s on them!
The first one can be found here .. Blog with a purpose “Triumph Over Tragedy Foundation” which exists to help families financially, who have had loved ones that have been in traumatic accidents that have left them either paralyzed or severely impaired. They support the family unit through biblical principles from the initial impact of tragedy or illness to the ongoing circumstances faced in the years to come. Thanks to Bryan White for putting them on my radar. Loyal readers know how I feel about him. IYKYK
This one is also one I found through my love of someone else but is still a really great thing they are doing with their star power. I love Tom Holland as Peter Parker …. He’s exactly who I pictured in my head as I read the comics all those years ago. The super not confident when walking but super confident flying through the air quality of how he portrays that character is something special. I will admit tho my favorite Tom Holland outing to date has been Cherry …. But the Crowded Room is a very close 2nd best at this moment (tho if you log into Apple TV+ for Peter Parker... well just don't). I’ve watched those 3 episodes about 3 times each already and each time I watch I catch something I missed before. The more I learn about this man the more I like about him.
However, this blog isn’t really about Tom Holland but it kind of is. See his family started The Brother’s Trust as a way to use his "star" power to do some good. They support charities that are doing great work but don’t get a lot of love. They are helping the every day person and doing the best they can and the Brother’s Trust exists to boost them up, give them a platform like no other to allow them to continue to do good works in the world. One such organization is DEBRA a registered UK charity that supports people affected by Epidermolysis Bullosa Also known as EB.
The Brother’s Trust also works with Epidermolysis Bullosa ResearchPartnership which is a USA Based non-profit organization dedicated to funding research to treat and ultimately cure EB. What is EB you may be asking yourself ? Cause that’s what I asked myself the first time I heard about it. It’s basically where the skin doesn’t function as skin. It tears and rips at the slightest touch and often results in large gaping, painful wounds all over the body. This of course also affects the inside that the skin is supposed to protect. It's a pretty debilitating disease and pictures i'm sure don't do it justice but they are also very graphic. Look them up to see but just know that while it's hard to look at, imagine living with it. Especially when you realize there is no cure for this life limiting and often fatal condition.
However today the focus is going to be on DEBRA, which was established in 1978 by Phyllis Hilton whose daughter, Debra, who suffered from EB. DEBRA is a support group for people living with EB supporting patients, family members, healthcare professionals and researchers as they work to live and fight EB.
Just before The Crowded Room press tour started a fundraiser was established in which Graeme Souness, famous UK football star (soccer for those of us on this side of the pond) is swimming a 21-mile stretch known as the English Channel to raise awareness about EB, raise money for DEBRA, and support those living and fighting EB daily. Tom has mentioned it in several of his interviews and that's how it ended up on my radar. They are over halfway to their goal of over 1,100,000 raised in support of this swim (his jersey number was 11). The more I learn about this charity and EB I can support anyone who is supporting any effort to make the effects of this disease less painful for those living with it and supporting thos watching people living with it.
So I encourage you to learn more about it … donate to the swim if you can and support this effort links are below.
Donate directly to Graeme Souness and Andy Grist swim of the EnglishChannel
I hope you like these ..... I am enjoying writing them up cause I always learn something new about the organization I am highlighting so they will continue even if you don't enjoy them. If you know of an organization I should spotlight drop it in the comments below or hit me up on Twitter @beaslma
If you haven't watched The Crowded Room yet on Apple TV what are you waiting for !? Get on that now. Next episode comes out next Friday!
Thank you,
Marcy
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