Blog with a purpose – DEBRA

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 2^nd 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

Media coverage of the swim     

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

Blog with a purpose : Triumph Over Tragedy Foundation

A few weeks before Christmas I got an e-mail from someone whom I consider one of my favorite people on this planet and I started looking into the organization he was telling me about so that one day I could share it with you all. Today is that day. Let me start by saying … I was going to say friend, which I suppose he is but we don’t see one another on a consistent basis, tho I wish that were true. I’d say I am his biggest fan but his wife might tell me otherwise…. He calls me a “blessing” but he’s by far blessed me more than I have him …. so I’m going with my favorite person.

This fella, who shall be named later I assure you, is a member of an organization that is called “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. Often organizations are all in at the beginning and the individual comes home alone to “figure things out.” This organization, based on what I’ve learned about them, is the opposite.

The organization was born out of necessity, as most often are, when a young man of 9 named Wesley was playing with his friends and fell 20’ from a makeshift zip line breaking his neck and becoming a quadriplegic. Wesley spent 6 months in the hospital with his parents and older brother, Reggie, by his side. In the aftermath of the tragedy, they thought of all the people who helped them during this difficult time and Triumph Over Tragedy Foundation was born. They knew they had to give back and a foundation that focused not only on the injured party but on the entire family unit was the way to go. They focused not only on the physical impairments but on the emotional scars that the entire family now faced as well as financial assistance. From guilt, to anger, frustration, and down right panic about what was to come, and depression it all needed to be addressed and attended to in different ways.

Their assistance is broken down into 3 main categories:

• 1.       The initial onset of illness or injury
• 2.       Adapting to life after the illness or injury
• 3.       An escape from the stress caused by the illness or injury

That escape part is how my favorite person initially learned about this organization. Bryan White, who loyal readers to the Blog know is one of my heroes, was invited to come and play music and participate in their annual golf tournament in Conyers, Georgia several years ago and now sits on the Advisory Board and is helping raise awareness about this organization. So of course, he reached out to me, and several others around the holidays to talk about this organization. Then I looked into it and here we are.

The easiest way to help is to earnestly pray for the Care Team, who make the initial touch with the family in the aftermath of the event, the grief counselors and pastors who are trained to sit and listen and talk with family members in their time of need, the Adapt Team who helps readjust the houses for wheelchair accessibility, and of course individual families forever changed by the event. By raising awareness in the community about the foundation so that others might know of the organization and what they can provide. Most importantly is by giving to the foundation so that they can continue their efforts and provide financial support to the families as they adjust to their new normal. Triumph Over Tragedy Foundation is a 501(c)(3) nonprofit organization. All contributions are tax deductible, but most importantly can impact a family for a lifetime.

One of the planned initiatives for the coming years is the building of an “event center” near Mansfield, Georgia (east of Atlanta). The event center, a short drive from one of the best rehabilitation centers in the Country, will serve as a retreat for those families and serve as a place to hold fundraising events, weddings with wheelchair access and eventually a concert venue to entertain guest and families in an effort to take their minds off of their troubles if only for a few hours.

If you are interested in learning more about this organization or in donating to their cause, check out the Triumph over Tragedy Foundation website (links below). From the stories on their facebook page, to what I’ve read about them they really are restoring hope by restoring families and I’m happy Bryan put them on my radar.

Links about the organization:

https://givetotriumph.org

https://www.facebook.com/TriumphOverTragedyFoundation/

https://givetotriumph.org/#donate

I've decided that this blog does not exist in a vacuum and after some soul searching decided that while it's purpose is to provide me a creative outlet when I need it it's also going to exist to lift up organizations, groups, or individuals that are doing good in the world from time to time. So, consider this the first "blog with a purpose" and it was a great one to start out with. 

Marcy