Poet George Estreich’s memoir on Down Syndrome

From gazettetimes.com:

Award-winning Corvallis poet George Estreich will read from his newly released memoir, “The Shape of the Eye: Down Syndrome, Family, and the Stories We Inherit,” on Wednesday, May 4, at Oregon State University.

The free public event begins at 7:30 p.m. in the Journey Room of OSU’s Memorial Union, with a book signing to follow.

In “The Shape of the Eye,” Estreich tells the story of raising his younger daughter, Laura, who is diagnosed with Down syndrome. Interweaving the scientific with the poetic, Estreich reflects on the idea of inheritance — in terms of genes, family legacy, and history. “The Shape of the Eye” is the latest title to appear in Southern Methodist University’s Medical Humanities Series.

Timothy Shriver, chairman and CEO of the Special Olympics, said Estreich’s book “draws us each into a new view of what it means to be ‘human’ and what it means to be ‘different.’ ”

Estreich is the author of the poetry collection “Textbook Illustrations of the Human Body,” winner of the 2003 Rhea and Seymour Gorsline Prize from Cloudbank Books.

Sharon Stone helps to raise over $100,000

From the NDSS:

Actress & Philanthropist Sharon Stone helps to raise over $100,000 at the National Down Syndrome Society’s Annual Spring Luncheon in New York City.

Sharon Stone as the keynote speaker and presented the 2011 NDSS Luncheon Honoree Award to Jagatjoti S. Khalsa for his extraordinary work in the book I’m Down with You (www.imdownwithyou.com), which seeks to capture the beautiful lives and faces of people living with Down syndrome in the United States.

Sharon Stone spoke about her passion and commitment in raising awareness for Down syndrome and the need to further educate the general public about the advancements and achievements being made by people with Down syndrome. Her dear family friend, Jim Burkhart, came out to support her. Sharon used to babysit Jim many years ago and they’ve remained close friends since.

Over 250 guests were in attendance. The event was emceed by CBS Early Show CO-Anchor Chris Wragge.

White House Disability Group Monthly Call

 

Next White House Disability Group Monthly Call to Take Place April 28th

In order to help keep you more informed, the White House is hosting monthly calls to provide updates on various disability issues, as well as to introduce individuals who work on disability issues in the federal government.

The next call will take place on Thursday, April 28 at 2:00 PM Eastern.

  

Dial in for listeners: United States: (888) 428-4479              

Title: White House Disability Call (use instead of code)

  

Please call in at least five minutes prior to the start of the call.

For live captioning during the call, visit http://www.fedrcc.us//Enter.aspx?EventID=1745291&CustomerID=321.  

Research links cancer cells & cognitive deficits in Down syndrome

From EurekAlert.org:

Dana-Farber Cancer Institute scientists have discovered new details of how cancer cells escape from tumor suppression mechanisms that normally prevent these damaged cells from multiplying. They also demonstrated a potential link between this cell proliferation control mechanism and the cognitive deficits caused by Down syndrome.

James A. DeCaprio, MD, of Dana-Farber said the results may provide new targets both for blocking the progress of cancer and perhaps for facilitating the growth of neurons in the developing brains of infants with Down syndrome.

DYRK1A's ability to turn off cell growth genes may also be involved in the lower-than-normal development of brain neurons in Down syndrome, say the scientists, who are investigating possible new avenues to treating the disorder.

While they tend to have cognitive losses, people with Down syndrome have a markedly lower risk of most types of cancer. DYRK1A is made by a gene on chromosome 21, which is present in three copies instead of the normal two in people with Down syndrome, causing the enzyme to be overproduced. DeCaprio said this abnormal activity could explain both outcomes: DYRKIA-triggered DREAM formation could help suppress cancers by driving them into senescence, and also reduce the generation of brain cells during development.

Tell your Congress member to keep Medcaid funding intact

From the NDSS:

Action Needed

Contact your Senators and Representatives in their home offices over the Congressional break, April 18-31st.  They will be in their home districts so you will have access to them.  Visit or write and tell them how important it is for your child to be able to access HCBS.  If they hold town hall meetings, make sure you attend and tell your story.  Personal stories are important.  Talking points can include the following:

• Individuals with disabilities will be forced into costly institutional programs if HCBS are lost.  This is unimaginable in the 21^st century.
• Individuals with disabilities can live in the community, work and become taxpayers at much less expense than costly institutional care.  They need supports to do so.
• Medicaid reform is needed and we are willing to work with them to make it happen.

Developing a final budget will be a long process and the dialogue with your legislators should begin now!

If you have questions, please contact Susan Goodman at susan@ndsccenter.org

Background

On April 15, 2011, the House of Representatives passed a budget resolution by a vote of 235 – 193.  A budget resolution is not a law but a blueprint for the budget that is eventually developed by both houses of Congress.

The drastic Medicaid cuts and restructuring proposals within the recently passed House Budget Resolution, called The Path to Prosperity would  likely, if they became law, deny individuals with disabilities the medical and long-term support services they need to live and work in the community by capping the amount spent on the program.  This would lead to “block grants” or “global waivers.” 

A block grant is an unrestricted federal grant and would mean that a significantly lower amount of funding would come from the federal government each year.  The states would have the discretion to decide who to enroll, what services to provide and who is eligible. 

The likely result of capping the amount of funding would be that individuals with disabilities would be forced into institutions as the only option for care.  This is unimaginable in this day and age given what we know about the great potential of individuals to live and work in the community and at much less expense to the taxpayers than institutions.

Some of the services, referred to as optional services, funded by Medicaid and the Home and Community Based Services (HCBS) Medicaid waiver programs which could be lost include:

• health insurance coverage
• supports to live in one’s own home including:  assistance making decisions, paying bills or other tasks involved in managing a home
• job supports
• speech or language services
• transportation
• communication aids