Am sure many of you may have seen yesterday's business news on the sale of
Ovation Pharmaceuticals, Inc. to H. Lundbeck A/S (Lundbeck) of Denmark.
Ovation is the distributor in the US for Xenazine [Tetrabenazine]. This sale
is pending final approvals and antitrust clearances, and closing is expected
to take place in March 2009.

Since none of the media news articles cover the concern patients and
caregivers may have reading this news so HD families need to be assured that
Ovation is saying this sale will NOT affect the availability or support for
any of their products. They can be referred to the below Ovations press
release.

Ovation's Press Release
http://www.ovationpharma.com/press_releases_detail.php?article_id=0ef6c8f4&relea\
se_type=press&current_yr=2009

FOR PATIENTS, RELATIVES and CAREGIVERS - Today's announcement will not
affect or interfere with any product availability or support for any of the
products that Ovation currently has on the market.  Likewise, there will be
no changes to the availability of support provided for Lundbeck's currently
marketed products.

• Eligibility Requirement - NYA Membership - The NYA Convention scholarship Fund was established for all current members of the NYA.  This means in order to apply for a 2009 NYA Convention Scholarship, young people living with HD, ages 9 through 29, must be a current member of the HDSA NYA. 

• Alpha-1 Antitrypsin Deficiency (Alpha-1)
• Chronic Granulomatous Disease (CGD)
• Huntington's Disease (HD)
• Idiopathic Pulmonary Fibrosis (IPF)
• Pulmonary Arterial Hypertension (PAH)

At the Caring Voice Coalition we understand that the diagnosis of a chronic disease often results in situations and emotions that deeply impact a person’s life. Visits to the doctor, complex treatment regimens and periodic hospitalizations make daily life harder to manage. Financial burdens caused by medical appointments, insurance costs and therapy co-payments may strain already limited financial resources. And feelings of depression, fear, and anxiety may make it hard to manage day-to-day needs, to plan and to hope for the future. To a person living with a life-threatening chronic disease, these challenges are often all too real.

Caring Voice Coalition seeks to empower our patients to meet these challenges through comprehensive, effective programs and a knowledgeable, caring staff. We value our reputation as a responsible, responsive organization with a unique, holistic approach to improving the lives of our patients.

Our current programs include:

Thanks to Marsha Miller the HDL is reporting on two recent studies in HD!

Weight loss in HD
http://www.hdlighthouse.org/showUpdate.php?p_articleNumber=609
HD Lighthouse Contributing Editor's Comment:
Marsha L. Miller, Ph.D. Posted to the HDL: 01-01-2009
Reports on Study:
Weight loss in Huntington disease increases with higher CAG repeat
number.Aziz NA, van der Burg JM, Landwehrmeyer GB, Brundin P, Stijnen T,
Roos RA; EHDI Study Group.-Leiden University Medical Center, Department of
Neurology, Leiden, The Netherlands.

Long term tetrabenazine use in HD
http://www.hdlighthouse.org/showUpdate.php?p_articleNumber=605
HD Lighthouse Contributing Editor's Comment:
Marsha L. Miller, Ph.D. Posted to the HDL: 01-01-2009
Reports on Study:
The Long-term Effect of Tetrabenazine in the Management of Huntington
Disease
Alfonso Fasano, Federica Cadeddu, Arianna Guidubaldi, Carla Piano, Francesco
Soleti, Paola Zinzi, and Anna Rita Bentivoglio

For anyone who missed it, here's the new HDSA link to Charles Sabine's
stirring opening address at the 2007 CHDI Conference:
http://www.hdsa.org/living-with-huntingtons/faces/past-faces/charlessabine.html

Charles will be one of the Keynote Speakers at the 2nd Annual Huntington's
Disease Clinical Research Symposium to be held in St. Pete Beach, Florida on
November 15, 2008, along with Russell Katz from the Food and Drug
Administration (FDA) and Jeremy Gruber, Legal Director of the National
Workrights Institute [GINA].  For more info on the HDCRS symposium, see:
http://www.register123.com/event/profile/web/index.cfm?PKwebID=0x12437526bb&varP\
age=home

Lucky me is going because I live here........I can hardly wait to hear him
in
person!  If anyone else will attending, let me know, please.

Love
Jean

See links to both the AP & Reuters news coverage articles.  The below are
excerpts only and not the full article.

Dr. George Daley and his colleagues at the Harvard Stem Cell Institute used
ordinary skin cells and bone marrow from people with a variety of diseases,
including Parkinson's, Huntington's and Down syndrome to produce the stem
cells.

Writing in the journal Cell, the team at Harvard Medical School and
Children's Hospital in Boston said the point is not yet to treat anyone, but
to get as many researchers as possible experimenting with these cells in lab
dishes to better understand the diseases. "This is just the first wave of
diseases," said Dr. George Daley, who is also a Howard Hughes Medical
Institute investigator.


Scientists create stem cells for 10 disorders
By STEPHANIE NANO, Associated Press Writer Fri Aug 8, 9:26 AM ET
http://news.yahoo.com/s/ap/20080808/ap_on_sc/sci_stem_cells_diseases

NEW YORK - Harvard scientists say they have created stems cells for 10
genetic disorders, which will allow researchers to watch the diseases
develop in a lab dish. This early step, using a new technique, could help
speed up efforts to find treatments for some of the most confounding
ailments, the scientists said.

The new cells will allow researchers to "watch the disease progress in a
dish, that is, to watch what goes right or wrong," Doug Melton, co-director
of the institute, said during a teleconference. "I think we'll see in years
ahead that this opens the door to a new way to treating degenerative
diseases," he said.

On the Net: Harvard Stem Cell Institute: http://www.hsci.harvard.edu


Skin cells produce library of diseased stem cells
http://www.reuters.com/article/latestCrisis/idUSN07315956
Thu Aug 7, 2008 12:00pm EDT By Maggie Fox, Health and Science Editor

WASHINGTON, Aug 7 (Reuters) - U.S. stem cell experts have produced a library
of the powerful cells using ordinary skin and bone marrow cells from
patients, and said on Thursday they would share them freely with other
researchers.

WHAT GOES WRONG

"They allow researchers ... to watch the disease progress in a dish, to
watch what goes right or wrong," said Harvard's Dr. Doug Melton, who will
head up the distribution of the cells. "I think we'll see in the years ahead
that this opens the door to a new way of treating degenerative diseases."

Every cell in the human body contains the same genetic instructions, and in
people with inherited genetic diseases, every cell carries the same
mistakes, Daley and Melton said.

Stem cells -- and the new iPS cells -- will grow virtually immortal in the
lab, and given the right conditions, can be made to form any desired tissue,
from heart muscle to brain cells.

One day these might be used as tailor-made patches to fix diseased or
damaged organs, but right now Melton said it is important to simply
understand the diseases.

While the cells are an alternative to the more controversial embryonic stem
cells, taken from a human embryo, Daley and Melton are adamant that they do
not replace them.

For one thing, viruses are used to carry the transformative genes to make
the iPS cells. Daley says cloning technology is still superior. "The egg
does it faster and better," he said.

Melton said researchers can get batches of cells from the lab to grow on
their own. Other cell types they have made to date include samples from
people with Huntington's disease, a form of combined immunodeficiency
commonly known as "bubble boy's disease," Lesch-Nyhan syndrome, Gaucher's
disease, and two forms of muscular dystrophy.

(

For those that didn't know the National HD Team Hope web page recently got
its final approval from HDSA and is now live and running at
http://www.walk4hd.org.  Check it out! You'll get some good idea's for
organizing a HD Team Hope Walk in your town!

HDSA's original NYA member Shana Martin is the National HD Team Hope
spokesperson so we know this will be a BIG SUCCESS!!!

Jean

PS - For those that haven't heard,  Shana Martin just won the 2008 World Log
Rolling & Boom Running Titles and she did it with a torn ACL on her knee!!
See this ESPN Sport article:
http://sports.espn.go.com/outdoors/timbersports/news/story?id=2945773

Grrrrrrrrrrr! People can post comments on this article on the below link.  I
did and so have several others in the US.

Huntington's disease leads to restaurant ban
http://www.thisislocallondon.co.uk/display.var.2387631.0.0.php
By Diana Pilkington

A Battersea woman with the degenerative disease Huntington's has been told
not to return to her favourite restaurant because her condition is putting
off the customers.

Catherine Blow, 47, has eaten at Portuguese restaurant Galo D'Ouro in
Queenstown Road almost every day for two and half years.

But last week the owner asked someone to pass on the message that she should
stay away.

Miss Blow, whose disease means she has difficulty speaking, said she is
"very upset" by the request.

Friends are concerned that she has lost a lifeline.

Neighbour Mary Fane-Gladwin said: "She rang me in tears. It made me so
angry. She's spent so much money there. She's a very courageous girl who
wants to be part of the community."


Miss Blow, who inherited the progressive disease from her father, has
suffered from Huntington's for 10 years.

The cousin of fashion designer Selina Blow, friends describe Catherine as a
"brilliant" painter with a BA and MA from prestigious art insitutions before
the disease took hold.

She now has great trouble controlling her movements.

Fransisco Conde, who owns Galo D'Ouro, said he was forced into his decision
because Miss Blow's appearance and physical condition was driving away
customers, with some even leaving the restaurant when she arrived.

Because she was losing control over her body, he said, her clothes did not
always stay up.

"I feel really sorry for her but I have to look at my situation as well," he
said.

"I can't sleep at night because of worries about my business. I will cook
takeaway for her. I like her but I can't accept her here."

Her cousin Amaury described it as a "very sad situation" and said he did not
blame anyone for what had happened.

"Catherine is a wonderful person who has through no fault of her own
inherited this illness, but unfortunately this has consquences not only for
her but for the restaurant. The owner has done his best for her," he said.

"Many people do not want to see sick people. The public do not want to see
the darker sides of life. That sort of attitude leaves people like Catherine
utterly isolated."