Nikki J
Moderator
- Joined
- Mar 22, 2012
- Messages
- 16,477
- Reason
- PALS
- Diagnosis
- 04/2014
- Country
- US
- State
- MA
- City
- Boston
- Status
Green Queen
Very helpful member
- Joined
- Mar 30, 2015
- Messages
- 1,304
- Reason
- DX MND
- Diagnosis
- 4/2016
- Country
- AUS
- State
- Western Australia
- City
- By the beach
I'm a hugger from way back. Now, because I'm tall and everybody I know seems to be shorter than me (except for Wayne, my dad and NEARLY Carrah) when I hug someone I get off balance and stumble and carry on. I am willing to put up with this slight inconvenience on the 21st, awesome idea.
God bless, Janelle x
God bless, Janelle x
veggiepete
Distinguished member
- Joined
- Jun 6, 2013
- Messages
- 102
- Reason
- Other
- Diagnosis
- 08/2013
- Country
- Uk
- State
- East Midlands
- City
- lowestoft
In the UK the MNDA is doing a silence speaks campaign for awareness month.. As most folks will have problems during the course of things...My wife Doris wants to do a sponsored silence too..I don't think she'll be able to..
MaxEidswick
Legendary member
- Joined
- Sep 1, 2013
- Messages
- 5,598
- Reason
- PALS
- Diagnosis
- 08/2013
- Country
- US
- State
- Texas
- City
- Pinehurst
Transition to Independence Act (S.1604) introduced by Senators Chuck Grassley (R-IA), Ron Wyden (D-OR) and Robert Casey (D-PA)
The Muscular Dystrophy Association (MDA) is dedicated to improving the lives of people living with neuromuscular disease by funding innovative biomedical research, providing coordinated care in our nearly 200 specialized clinics, and supporting public policy that benefits our community. To that end, MDA supports the Transition to Independence Act (S.1604), a bipartisan bill introduced today by Senators Chuck Grassley (R-Iowa), Ron Wyden (D-Oregon) and Robert Casey (D-Pennsylvania).
For many people with disabilities, the transition to, and through, adulthood offers many opportunities and poses many challenges, and MDA is dedicated to helping our patients and families navigate those transitions, including pursuing their career goals. To that end, MDA hosts Transitions summits, maintains an active Transitions Blog, and connects the disability community through our Transitions Center website.
The legislation introduced in the Senate today:
• Brings national attention to some of the challenges faced by those with disabilities as they seek to engage in meaningful employment;
• Establishes the Transition to Independence Medicaid Buy-In Option demonstration program, which awards bonus payments to 10 selected states that participate in the Medicaid Buy-In program and meet specific and measurable benchmarks in expanding employment for individuals with disabilities within the state (While each state would create its own parameters and would organize its benefits and services accordingly, each state would be required to allow participants earning at least up to 400 percent of the poverty line to benefit from the Medicaid program); and
• Would allow disabled individuals in the selected states to buy in to their state Medicaid system to secure the critical supports offered by such programs. The five year demonstration program is designed to yield qualitative and quantitative data regarding the employment of individuals with disabilities, including identifying best practices from 10 different state models, which can be evaluated and considered in preparing permanent legislation.
We applaud the efforts of Senators Grassley, Wyden and Casey in raising the critical issue of achieving employment while keeping the Medicaid support that, for many, is required to maintain employment. We look forward to working with their offices and our patients and families as we engage together in a dialogue about employment for those with disabilities - and to help ensure this bill becomes law.
MDA is committed to making the voices of our families heard in Washington, D.C., from Capitol Hill to our executive and regulatory offices and agencies. Your help is essential to drive progress. Take action on issues important to the neuromuscular disease community today. Learn more and make your voice heard. Click the button below to become an MDA advocate.
There is strength in numbers. MDA would not be the dynamic organization it is today without each and every one of our community members and your contributions
The Muscular Dystrophy Association (MDA) is dedicated to improving the lives of people living with neuromuscular disease by funding innovative biomedical research, providing coordinated care in our nearly 200 specialized clinics, and supporting public policy that benefits our community. To that end, MDA supports the Transition to Independence Act (S.1604), a bipartisan bill introduced today by Senators Chuck Grassley (R-Iowa), Ron Wyden (D-Oregon) and Robert Casey (D-Pennsylvania).
For many people with disabilities, the transition to, and through, adulthood offers many opportunities and poses many challenges, and MDA is dedicated to helping our patients and families navigate those transitions, including pursuing their career goals. To that end, MDA hosts Transitions summits, maintains an active Transitions Blog, and connects the disability community through our Transitions Center website.
The legislation introduced in the Senate today:
• Brings national attention to some of the challenges faced by those with disabilities as they seek to engage in meaningful employment;
• Establishes the Transition to Independence Medicaid Buy-In Option demonstration program, which awards bonus payments to 10 selected states that participate in the Medicaid Buy-In program and meet specific and measurable benchmarks in expanding employment for individuals with disabilities within the state (While each state would create its own parameters and would organize its benefits and services accordingly, each state would be required to allow participants earning at least up to 400 percent of the poverty line to benefit from the Medicaid program); and
• Would allow disabled individuals in the selected states to buy in to their state Medicaid system to secure the critical supports offered by such programs. The five year demonstration program is designed to yield qualitative and quantitative data regarding the employment of individuals with disabilities, including identifying best practices from 10 different state models, which can be evaluated and considered in preparing permanent legislation.
We applaud the efforts of Senators Grassley, Wyden and Casey in raising the critical issue of achieving employment while keeping the Medicaid support that, for many, is required to maintain employment. We look forward to working with their offices and our patients and families as we engage together in a dialogue about employment for those with disabilities - and to help ensure this bill becomes law.
MDA is committed to making the voices of our families heard in Washington, D.C., from Capitol Hill to our executive and regulatory offices and agencies. Your help is essential to drive progress. Take action on issues important to the neuromuscular disease community today. Learn more and make your voice heard. Click the button below to become an MDA advocate.
There is strength in numbers. MDA would not be the dynamic organization it is today without each and every one of our community members and your contributions
Green Queen
Very helpful member
- Joined
- Mar 30, 2015
- Messages
- 1,304
- Reason
- DX MND
- Diagnosis
- 4/2016
- Country
- AUS
- State
- Western Australia
- City
- By the beach
MaxEidswick
Legendary member
- Joined
- Sep 1, 2013
- Messages
- 5,598
- Reason
- PALS
- Diagnosis
- 08/2013
- Country
- US
- State
- Texas
- City
- Pinehurst
MaxEidswick
Legendary member
- Joined
- Sep 1, 2013
- Messages
- 5,598
- Reason
- PALS
- Diagnosis
- 08/2013
- Country
- US
- State
- Texas
- City
- Pinehurst
TEXAS CHAPTER
Dear Max,
ALS is a global problem. It does not discriminate by age, ethnicity, or social demographic.
Today, The ALS Association joins the International Alliance of ALS/MND Associations in recognizing June 21 as Global Awareness Day. ALS, or Motor Neurone Disease (MND) as it is known in countries like Great Britain and Australia, affects an estimated 420,000 people worldwide each year.
Tell the world that ALS is a global problem and we need help to find the cure!
Please use #alswithoutborders when you spread ALS awareness today.
Thank you for your commitment to the fight!
Sincerely,
Tanner Hockensmith
Executive Director
The ALS Association Texas Chapter
P.S. -- The ALS Ice Bucket Challenge enables scientists to collaborate globally, accelerating the path to a cure. Project MinE is one new global research project that would not have been made possible without YOUR participation in The ALS Ice Bucket Challenge. The goal of the project is to sequence the whole genome of at least 15,000 people with ALS -- a sample that the research community is hopeful will lead to new discoveries about the cause of ALS. THANK YOU!
The ALS Association Texas Chapter
P: 877.714.0088
Dallas Office: 2251 Chenault Dr., Carrollton, TX 75006
San Antonio Office: 4939 DeZavala, Suite 105, San Antonio, TX 78249
Austin Office: 1315 Sam Bass Cir., Unit B5, Round Rock, TX 78681
Houston Office: 26119 I-45 N, Suite 202, Spring, TX 77380
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Dear Max,
ALS is a global problem. It does not discriminate by age, ethnicity, or social demographic.
Today, The ALS Association joins the International Alliance of ALS/MND Associations in recognizing June 21 as Global Awareness Day. ALS, or Motor Neurone Disease (MND) as it is known in countries like Great Britain and Australia, affects an estimated 420,000 people worldwide each year.
Tell the world that ALS is a global problem and we need help to find the cure!
Please use #alswithoutborders when you spread ALS awareness today.
Thank you for your commitment to the fight!
Sincerely,
Tanner Hockensmith
Executive Director
The ALS Association Texas Chapter
P.S. -- The ALS Ice Bucket Challenge enables scientists to collaborate globally, accelerating the path to a cure. Project MinE is one new global research project that would not have been made possible without YOUR participation in The ALS Ice Bucket Challenge. The goal of the project is to sequence the whole genome of at least 15,000 people with ALS -- a sample that the research community is hopeful will lead to new discoveries about the cause of ALS. THANK YOU!
The ALS Association Texas Chapter
P: 877.714.0088
Dallas Office: 2251 Chenault Dr., Carrollton, TX 75006
San Antonio Office: 4939 DeZavala, Suite 105, San Antonio, TX 78249
Austin Office: 1315 Sam Bass Cir., Unit B5, Round Rock, TX 78681
Houston Office: 26119 I-45 N, Suite 202, Spring, TX 77380
View Online | Change your email preferences
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