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February 2013



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Archive for February 15th, 2013


Dear friends,

Last year, the Autistic Self-Advocacy Network, along with Not Dead Yet and the National Council on Independent Living, held a Day of Mourning for people with disabilities killed by their relatives and caregivers. 

Day of Mourning began as a response to the murder of George Hodgins, a 22-year-old autistic man from California, and to the way people were talking about his death. Far too often, when a disabled person is murdered by a caregiver, journalists write as though it is the disabled victim who has perpetrated a crime simply by existing. In discussing the killing, people say that we should feel sorry for the murderer, because they had to live with a disabled relative. When a disabled person is murdered, many people act as though the murder victim’s life, not their death, was a tragedy.

On March 30th, 2012, we held vigils in 18 cities to remember those we have lost, and to remind the world that their lives had value.

On March 31st, 2012, a 4-year-old autistic boy named Daniel Corby was drowned in a bathtub by his mother. 

There is so much work to be done to change public perceptions about the worth and the quality of our lives. That is why the Autistic Self-Advocacy Network will be holding Day of Mourning again this year on Friday, March 1st. And I need your help to organize vigils across the country.

The first time I organized a vigil, I was very scared to do it, but it was not as hard as I feared. If you are interested in leading a vigil in your area, you begin by finding a good spot for it, making sure you can gather a group of people there, and spreading the word to your local community. If you want to organize a vigil, contact me at  zgross@autisticadvocacy.org for instructions and support. I will help you find a location and to plan and publicize your event. 

On March 1st, we will remember our dead and take a stand against the violence facing our community. I hope to see you there.


In solidarity,

Zoe Gross

Autistic Self Advocacy Network



Throughout February there are lots of ways you can get involved with National Heart Month and raise funds to support our life-saving work. How will you get involved?



Write a Love Note


For a suggested donation of just £1, you can post a heartfelt Love Note in your local BHF shop window for all to see this Valentine’s Day. Find out how to get your Love Note



Love Installations



This year we have created some amazing Love Installations in London. You can find them in Covent Garden and in Camden Lock Market. Come along and take part in the installation.



Find out about Love Installations



You can help us fill the installations. For a donation of just £3, you can add your personalised BHF designed lock and message.

Order your fundraising kit:






These Four Things Happen Right Before a Heart Attack

By Katrina Turner


Every year, approximately 785,00 Americans suffer a first heart attack. And 470,000 who’ve already had one or more heart attacks have another one. The scary thing is that 25 percent of All heart attacks happen “silently:, without clear or obvious symptoms.


Even when symptoms occur, they can be so mild or vague, most people don’t even realize it’s heart-related (unless they are made aware). Four things in particular are the most sinister signs of a silent heart attack.


These four things are the focus of a recent video presentation by renowned cardiovascular expert Dr. Chauncey


Crandall: Silent Heart Attacks: A Special Newsmax Heart Health Report. According to Dr. Crandall, the reason silent heart attacks go untreated is because people don’t even notice the symptoms, so he created a special video presentation to show the four things to look for that may be a silent warning — before it’s too late to intervene and survive the damage.


Timing is the most critical factor for survival. Statistics show a clear link between delay in treatment and disability or death — the amount of time that elapses between the first sign of symptoms and receiving care.


That’s why knowing what to look for in terms of symptoms is critical, especially when they’re the kind that most people don’t think to associate with a heart attack — like the four things in Dr. Crandall’s video,Silent Heart Attacks: A Special Newsmax Heart Health Report.


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Further Heart Related Articles


The Greater the Satisfaction You Feel with the Components

of Everyday Life, the Greater the Protection Against Heart Disease:



Marker Predicts Heart Disease In People With Schizophrenia:

Saved By a Punch: Playground Knockout Leads to Rare Heart Condition Discovery:
Heart Health: Why High Blood Pressure Really is a Silent Killer:
Study Suggests a Relationship Between Migraine Headaches in Children and a Common Heart Defect:
Heart Health: Increased Cardiac Risk Linked to Occasional Exertion, Sex:
Doors Set to Close on Child Heart Op Units, 8 Year Old Autistic Boy Set For Lifesaving Op Amid Relocation Fears:
Heart Health: It’s National Heart Month!/ Scientists Look to Stem Cells to Mend Broken Hearts/ Heart Attack Symptoms in Men & Women:
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Link Between Childhood Physical Abuse and Heart Disease:
Heart Patients with Anxiety Disorder Experience More Cardiac Events, Deaths:
Links Between Hypertension, Bipolar Disorders Identified:
Side Effects of Depression Meds Improve Heart Health:
Cardiac Health and Creative Engagement:
Heart Health: February is National Heart Month:
John Hopkins Health Alert: Blood Pressure Basics/ Cardiac Risk From Chronic Stress:
Heart Health: Garlic For a Healthy Heart? Go Fresh, Study Says:
Depression, Anxiety Bad For the Heart:
Gene Linked to Depression in Cardiovascular Patients:
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Heart Health: More Reasons to Eat Dark Chocolate/ Another Reason To Go Easy on the Salt Shaker:
Psychological Stress & Unexplained Chest Pain/ Heart Health: CPR to the Rescue:
Clinical Review: Blood Pressure Self Monitoring Q & A From National Conference:
Study: Teasing Apart Links Between Depression & Heart Disease/ Do You Know What To Do For A Stroke?:
Poor Lifestyle Choices Not Stress Accounts For Most Anxiety, Depression Linked Heart Disease:
Anxiety Disorders Linked To High Blood Pressure/How High Blood Pressure Can Affect Your Memory:

British Heart Foundation:


Mother Seeks Treatment, Awareness For Angelman Syndrome

Individuals often misdiagnosed; Melissa Winger wants education

Will Norris is a precocious 3-year-old boy born Nov. 8, 2009.
He is a happy child with a positive demeanor, his mother reports, and he has a lovely smile.
That is one of the traits of Angelman syndrome (AS), but other traits are less agreeable, such as life-threatening seizures (if not properly treated), significant developmental delays and lack of speech, including cooing or babbling as an infant.
“When Will wasn’t hitting the usual milestones, we didn’t stop visiting doctor after doctor until finally one knew about Angelman syndrome,” his mother, Melissa Winger, said. “But that process took too long, and my heart goes out to families across the country that may right now be experiencing this same anguish.” 

Angelman syndrome is a neurodevelopmental disorder similar to autism. There is no cure for the syndrome, which is genetic, but currently there are human clinical trials being run in Florida to see if minocycline, an antibiotic, will help alleviate systems. 


Will was diagnosed in October 2011 with UPD Angelman syndrome. He lives with his mother and sister in Avon Lake and although he is non-verbal, he has no problem of letting you know when he is happy or sad or what he wants.


“He crawls like nobody’s business, and there isn’t a piece of furniture he is afraid to climb,” Melissa said.


“His favorite shows are Sesame Street and Lazy Town and will never, ever turn down chocolate.”

Will remains non-verbal and does not walk, but luckily, he remains seizure free.
“He gets therapy speech and physical therapy,” Melissa said. “We’re hoping  he will walk at some point. He tends to more high functioning than many with the syndrome.”
Education, treatment are key
Melissa said she is looking forward to the day he runs down the street and yells for her. Whether that happens remains to be seen. Currently, there is no cure for Angelman syndrome, named after Dr. Harry Angelman, who discovered the syndrome in 1965.
Only one third of infants who exhibit developmental delays were referred to early intervention specialists, indicating that the optimal or appropriate form of healthcare is not always provided or available. Statistics are more daunting for individuals with Angelman syndrome, a frustration for Melissa. 

Prior to obtaining proper diagnosis, nearly 50 percent of individuals with Angelman syndrome were incorrectly diagnosed with another disorder, sometimes more than once, according to the Angelman Syndrome Foundation. Of those individuals, more than 70 percent had to wait at least a year to receive a proper diagnosis—and during that time, individuals are not receiving the essential treatments their condition requires. 
“As a loved one of an individual with Angelman syndrome, these statistics are unacceptable—and I believe many would feel the same way I do,” Melissa said. “


“The agony that my family experienced on our journey to obtain the proper diagnosis for Will was, to say the least, the most challenging and heart-wrenching time of my life.”

Melissa said it’s important educate parents of children with a “general developmental delay” (as some doctors diagnose) as well as educating medical professionals who are unaware of this disorder.
“(Then) we can hopefully reduce these staggering misdiagnosis statistics. It will ensure that our children get the crucial treatments they need, as early as possible,” she said.
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