 |
In this Issue:
President's Message
A Mother's Letter: Dear Spinal Muscular Atrophy...
Parent University: "The ABLE Account - What Is It?"
Parent University: "Legal Documents Needed to Support the Life Plan and a Discussion of
Guardianship and Conservatorship"
Nightclub For Adults With Disabilities Fosters Love, Friendship And Inclusion
How 'America's Got Talent' Contestant Kodi Lee Shattered Stereotypes About Disability
This is Where We Will Be...
|
Dear Clients and Friends,
Yes, SUMMER IS HERE! After weeks and weeks of rain, here we are in the middle of hot summer days. I hope you are able to enjoy it.
I did get my vacation in June. I was able to visit Russia, and one of the things I always pay attention to when traveling is how accessible a town is,
and how they think about those with disabilities. But I found myself focusing instead on the lives of those I met, with or without disabilities.
Every single person I came in contact with was kind, gracious and grateful. I think when we live through difficult times, we develop a sense of what
is really important in life.
In this issue, I think you will find many examples of that kindness and understanding, from the Nightclub that fosters love and inclusion as well as
how shattering stereotypes about disabilities is becoming more common. I want to draw attention to one special article written by Brittany Stineman.
Brittany is a Mom who has a child with special needs, and I think it will touch your heart like it did mine. I'm still sitting here thinking about her words.
I want to thank all of the families who have shown me the kindness and gratitude they have over the years. I appreciate all of the families we have worked with.
You give me my purpose and I'm so thankful for that.
Warmest regards,
Mary Anne Ehlert,
Founder & President
|
|
|
Dear Spinal Muscular Atrophy with Respiratory Distress:
A Mother's Letter
Yes, today I am writing my letter to you- the name that cut through my heart after hearing it for the very first time. The IGHMBP2 mutation - an acronym that I couldn't remember for days after you appeared. You wreaked havoc on my life, when you reared your ugly head that October morning almost 2 years ago.
I know you all too well now. I do wish we had never met, because that would make Nash's life so much easier. I would to anything in my power......
Read the full letter here
smashSMARD is a non-profit 501(c)3 organization which mission is to increase awareness of SMARD1 and the IGHMBP2 gene mutation in order to fund research that will lead to treatments and cures.
|
Parent University: "The ABLE Account - What Is It?" on
August 15, 2019!
 |
Protected Tomorrows' Parent University presents...
"The ABLE Account - What Is It?"
|
|
Parent University: Legal Documents Needed to Support the Life Plan and a Discussion of Guardianship and Conservatorship - In Simple Terms
July 18
, 2019!
Powered by Protected Tomorrows and presented by Mary Anne Ehlert, President and Founder of Protected Tomorrows, we are proud to offer
you
our fifth in a series of educational workshops:
"
Legal Documents Needed to Support the Life Plan and a
Discussion of Guardianship and Conservatorship - In Simple Terms
"
In this class, we will talk about the
concepts and knowing what the legal "talk" means, how it applies to you and your family, and what you really need is so important to the big picture of the future. We will
discuss all of the options that we might have and how to think about the realities.
M
ary Anne Ehlert will host this free online Zoom class on July 18th, 2019 from 7:00 - 8:30 pm CDT.
|
Nightclub For Adults With Disabilities Fosters Love, Friendship And Inclusion
by Yvonne Wenger, The Baltimore Sun
By the time the doors open 15 minutes early that Saturday night, dozens are lined up to get inside. Women wear wedges and bodysuits that hug their curves. Men sport collared shirts and their favorite sneakers. Some have caregivers guiding them; others need wheelchairs. Many wear the signature T-shirts stamped with the logo, Club 1111.
It's the long-awaited evening when the League for People with Disabilities at 1111 E. Cold Spring Lane transforms into a glittering nightclub for adults with disabilities. The classrooms become dance floors with disc jockeys playing pounding club music. Merchandise, like sunglasses and blinking rings, is stacked up and ready to be sold, and volunteers wait in a makeshift spa to do fingernails and put on temporary tattoos. A lounge with dim lights is set up for chilling.
Click here to read more...
|
How 'America's Got Talent' Contestant Kodi Lee Shattered Stereotypes About Disability
By The Conversation
If you haven't seen Kodi Lee's May 28 performance on "America's Got Talent,"
it's worth a
watch.
The 22-year-old Lee is blind and has autism. His rendition of Leon Russell's "A Song for You" brought the crowd to its feet - and thrilled viewers at home.
"Loved this moment so much! Stood up and cheered in my living room!"
Oprah tweeted
.
Much of the media coverage portrayed Lee as someone who, in developing his musical ability to such a high level,
overcame all odds - a common though sometimes troublesome trope used to describe people with disabilities who achieve any measure of success.
|
|
|
This is Where We Will Be...
|
|
|
|
|
|
