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It’s A Miracle Cure! #HAWMC

Posted by Connie on Friday, April 20th, 2012 at 11:16 pm and is filed under Chronic Illness, Non-Profits.
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Prompt: Miracle Cure. Write a news-style article on a miracle cure. What’s the cure? How do you get the cure? Be sure to include a disclaimer  ;)

TAMPA(AP) – The Mysathenia Gravis Foundation of America in cooperation with the Muscular Dystrophy Association and the The National Institute of Neurological Disorders and Stroke announce a cure for Myasthenia Gravis, a chronic neuromuscular disease that causes muscles to tire and weaken easily. After the Phase 4 trial of a surgical procedure known as a thymectomy — removal of the thymus – along with Humira, a drug used to treat Rheumatoid Arthritis, 90% of the 150 patients have gone into remission and remained in remission for six months.

Neurologists are working with Thoracic Surgeons to formulate plans for thymectomies as patients will require this surgery before the new prescription can start. Hospital staff will be educated about the surgery, recovery and the disease. After this cure was announced, it was learned that many in the medical community need updated information about Myasthenia Gravis.

Muscular Dystrophy clinics are in the process of stocking up on Humira, as the initial injection must be done while under a doctor’s care. Some patients have had a serious reaction to this medication. Within the trial, one person went into anaphalytic shock, one had hives.  This is not unusual with any prescription. This brings relief to those diagnosed with Myasthenia Gravis, approximately 20 out of 100000 individuals in the U.S. have been diagnosed with this disease.

Photograph of the patient showing right partia...

Photograph of the patient showing right partial ptosis. The left lid shows compensatory pseudo lid retraction because of equal innervation of the levator palpabrae superioris (Herring's law). b. Post tensilon test: Note the improvement in ptosis. (Photo credit: Wikipedia)

Disclaimer: Wouldn’t this be wonderful? Unfortunately, there  is no cure for Myasthenia Gravis. Humira is not a medication used to treat MG. If you want to learn more about MG, please take the time to read, “What is Myasthenia Gravis (MG)” from the Myasthenia Gravis Foundation of America. It is one of the best descriptions I have found.

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Educational Advocacy for MDA Members

Posted by Connie on Saturday, October 29th, 2011 at 8:36 pm and is filed under Advocate, Non-Profits.
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The MDA is presenting a free webinar for members on the subject of Educational Advocacy scheduled for  Wednesday, November 2 2 p.m. Eastern; 11 a.m. Pacific online.  Registration is required before the start of the program. Leading the program will be Marie Ritzo and Jill Castle  who will discuss information for families with school-age children affected by neuromuscular disease.

Marie J. Ritzo

Marie J. Ritzo is a clinical social worker at Children’s National Medical Center in Washington, D.C. Ritzo provides social work services for the MDA clinic and the Surgical Care, Trauma and Burn Unit at Children’s.

Ritzo received her master’s degree in social work from the University of Maryland School of Social Work and Community Planning, with a concentration in clinical work with children and families. She has been a member of the Institutional Review Board and has received awards for her professional contributions, including the Dorothy Scallan Award for Excellence in Social Work (1998) and the award for Best Practice in Negotiating Systems from the Society for Social Work Leadership in Healthcare (2003).

Jill Anne Castle

Jill Anne Castle is a parent specialist for the Arizona Department of Education, where she helps parents navigate the special education process. Castle is currently finishing her master’s degree in educational psychology and is a candidate for BCBA (board-certified behavioral analyst).

Castle has a son who is affected by Duchenne muscular dystrophy (DMD). She has dedicated her career to helping children with special needs receive the support they deserve.

Program Topics will include:

  • The difference between IEP and Section 504 laws
  • How to support your child in the school system
  • The importance of forming a partnership with your child’s school
  • Resources

Information for this post provided by the MDA.

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Jerry Lewis No Longer MDA Host or Chairman

Posted by Connie on Thursday, August 4th, 2011 at 1:34 am and is filed under News, Non-Profits.
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I learned through an email from the MDA, that Jerry Lewis in no longer the MDA Telethon Host or the National Chairman. The link led to a two paragraph press release on the Muscular Dystrophy Association website which gave no further information. It tersely states:

The Muscular Dystrophy Association (MDA) announces that today Jerry Lewis has completed his run as its national chairman. In May, Lewis and MDA announced his retirement as host of the MDA Labor Day Telethon.

MDA Chairman of the Board of Directors, R. Rodney Howell, M.D., said, “Jerry Lewis is a world-class humanitarian and we’re forever grateful to him for his more than half century of generous service to MDA. We will not be replacing him as MDA national chairman, and he will not be appearing on the Telethon.”

I noticed that the MDA website no longer says, Welcome to MDA, Helping Jerry’s Kids. It now states, Welcome to MDA, Muscular Dystrophy Association.

Jerry Lewis

Does this seem to you as if the MDA Board of Directors fired Jerry Lewis? I’m aware of his controversial statements during telethons, especially when he used the derogatory term, “faggot” on the 2007 telethon. I dislike “Jerry’s Kids” when there are many adults living with muscular dystrophy and it feels as if we, as adults are put into the same category as kids. But, he has been the face of the MDA and especially of the Telethon, which helps to raise the bulk of the money for this organization.

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MDA Equipment Loan Closet

Posted by Connie on Monday, April 25th, 2011 at 11:59 pm and is filed under Health Information, Health Supplies Equipment, Non-Profits.
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The MDA has equipment loan closets available to patients with referrals from MDA doctors. The MDA used to provide durable medical equipment for free, with some monetary limits, but now loans used equipment instead.

The Muscular Dystrophy Association accepts donations of gently used equipment (shower chairs, hospital beds, patient lifts, walkers and canes, communication devices, wheelchairs, scooters, etc.) and even makes some repairs if needed. When an MDA patient is prescribed medical equipment by an MDA doctor, the local office makes use of their database to locate the needed item if possible.

MDA staff can also assist with the purchase of durable medical equipment. When insurance doesn’t cover the purchase of these items, it is best to go through the Muscular Dystrophy staff for recommendations before you make a purchase on your own. They are aware of companies that may provide discounts, work with other organizations to get funding and have a good reputation.

The MDA equipment loan closet is also open to people who travel. Again, contact your local clinic to get information on this service. To find your local clinic, call (800) 572-1717.

April is Autism Awareness Month

Posted by Connie on Sunday, April 3rd, 2011 at 9:16 pm and is filed under DisABILITY Advocate, Health Information, Non-Profits.
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April is Autism Awareness Month in the United States. This month is set aside specifically to educate people about Autism, help with funding of programs for Autism and
and for research. According to the CDC, their

most recent report from the 11 sites that make up the Autism and Developmental Disabilities Monitoring (ADDM) Network identified 2,757 children with autism spectrum disorders (ASDs) in a total population of 308,038 children aged 8 years, indicating a prevalence of approximately one in 110 (or 1% of children)

That information alone should cause you to get involved in sharing the information about Autism Awareness Month. There are various types of activties planned for April 2011.

  • Build-A-Bear Workshop is selling its special edition Nikki III bear in its more than 200 stores across the U.S. and Canada, with a portion of the proceeds benefiting Autism Speaks and purple satin hearts for $1.
  • The Autism Society is proud to partner with Academy Award®-winning director Gerardine Wurzburg to release her feature length documentary Wretches & Jabberers. The film will be released through nationwide “movievents,” which will include a screening of the film and a live panel discussion featuring Tracy Thresher and Larry Bissonnette, the film’s featured self-advocates with autism.
  • Take political action for Autism by staying up to date with Take Action from The Autism Society.
  • Walk for Autism, take part in events in your area, volunteer and donate.

Events for The Autism Society can be found here – 1Power4Autism
Events for Autism Speaks can be found here – Austism Speaks Upcoming Events

Here’s the trailer for Wretchers and Jabbers. I believe that you’ll learn from this and want to learn much more.

MDA Shamrocks Fundraiser

Posted by Connie on Thursday, February 24th, 2011 at 12:54 am and is filed under Non-Profits, volunteer.
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In 2010 thousands of MDA families across the country joined our Shamrocks Crusade, making a HUGE impact on the success of our Shamrocks Campaign. Once again thousands of restaurants and retailers nationwide have teamed up with MDA to sell paper Shamrocks and decorate their establishments for Saint Patrick’s Day 2011.

MDA Shamrock

One simple question — “Would you like to buy a Shamrock for MDA?” — has rallied the support of millions of customers in behalf of families affected by muscle disease. Shamrocks cost either $1 or $5 and the money raised goes towards research and treatment.

We’re asking you and your family to join the MDA Shamrocks Crusade by visiting participating Shamrocks partners to help show appreciation for their support. By thanking associates and managers, you’ll help make 2011 a record-breaking Shamrocks year and have a lot of fun at the same time.

How To Help

1. Visit locations and thank as many associates and managers as possible and make a difference!

2. Pass out goodies, cards and letters to show appreciation.

3. Secret Shop participating locations and see if they ask you to buy a Shamrock:

  • If they do, award them with thanks and a small token of appreciation.
  • If they don’t, introduce yourself as a Shamrocks Crusader, offer them a second chance at a prize, and tell them how much their support means.

4. Take pictures of associates in front of their Shamrocks displays and with you – our “Shambassadors”.

5. Help MDA promote shamrocks – add a shamrock badge to your Facebook and Twitter messages, encouraging friends to buy a shamrock or text “IRISH” to 20222.

6. Tweet  a photo of you and an MDA Shamrock to @MDANews with the hashtag  #MDAShamrocks and @MDAnews will retweet your photo! Add you photo to the MDANational Facebook wall and get more people involved!

Information provided by the MDA

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