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Category Archives: Advocacy

Does Frankenstein have Autism?

 

During a presentation on autism to a third grade class today, our Outreach Coordinator received a rather amusing question, “Does Frankenstein have autism?”  With Halloween so close it is certainly understandable why a child might pose such a question. Frankenstein is definitely different. He might not look the same as most people, or speak the same way, or act the same way. While this doesn’t necessarily mean Frankenstein has autism, one can understand why a child being introduced to autism for the first time might think so.

As part of the autism community, we believe it is our responsibility to not only fulfill our mission of providing quality ABA therapy to communities that need it, but we also to spread awareness about autism and educate our community.  When a local grade school teacher approached us to give a presentation to her third grade class, we knew this is something we wanted to do, although we had never done it before! By educating our youth, we teach them about what autism is, what it looks like, and things to keep in mind when interacting with someone who has autism. While someone with autism might act differently, hear things differently, or see things differently, it doesn’t mean they can’t be our friend or can’t do the same things we do. It is important that children understand how to accept the differences that come with autism, or any other disability, disease, etc… and know that it is ok to be different. We are so glad to have had this opportunity to teach local children about autism and look forward to having the opportunity to do it again in the future.

Special Outdoor Leisure Activities

SOLO provides outdoor winter educational and recreational opportunities for persons with disabilities from St. Joseph County, Indiana in an effort order to:

  • Encourage independence and increase participation in family and community leisure opportunities
  • Educate the community regarding the capabilities of and opportunities for persons with disabilities
Skiing offers a freedom of movement that most persons with disabilities have never experienced. At the same time, it creates an overwhelming sense of accomplishment and unsurpassed confidence. A person who has difficulty walking will find themselves gliding smoothly down the hill with a new found poise and agility.

We welcome both adults and children at least 8 years of age to join us. SOLO is open to students with physical, visual, auditory, or significant mental impairments

Monday, December 1, 2014   6-7 pm
Logan Center   2505 E. Jefferson Blvd, South Bend
Membership and orientation meeting.  All students, families and volunteers should attend. Learn about SOLO’s plan for this year and vote to elect SOLO Board of Directors.

Monday, December 15, 2014   6-7 pm
Logan Center   2505 E. Jefferson Blvd, South Bend
Exercise and training session for students and volunteers. Student registration and medical forms must be turned in by this date.

Monday, December 22, 2014   7-9 pm
Swiss Valley Ski Area   Jones, MI
If Swiss Valley is open, we will conduct an on-slope training session for all new and returning volunteers, which will introduce you adaptive training tools and techniques, and allow volunteers to practice using them. If Swiss Valley is not open yet, alternate date is Monday, December 29, 2014.

Saturday, January 3, 2015   9-10:30 am
Rum Village Park   South Bend, IN
First session for the cross-country skiing and snowshoeing program. There will be a training session for new nordic volunteers immediately following the ski session. The program will run for 6 consecutive weeks. If there is not enough snow, we will do an alternate activity like hiking.

Monday, January 5, 2015   6-10 pm
Swiss Valley   Jones, MI
First session for the downhill skiing program. The program will run for 6 consecutive weeks, unless there is a cancellation due to weather conditions, in which case the program will be extended an additional week. All students and volunteers are welcome to ride the bus that leaves from and returns to Memorial’s Lighthouse Place (Medpoint) in Granger. Call the Snow Line at 574-245-9634 to make sure we are skiing.

 

To learn more click here!

Can Google find the cure for autism?

Over the past 10 years, no disorder has become so familiar to Americans, yet remained so mysterious, as autism.

Now affecting 1 in every 68 children born in the United States—up from 1 in 166 a decade ago—the condition has so far resisted nearly all efforts to cure it, curb it or even precisely define it. As a result, speculation and controversy surrounding the disease has mounted, leaving parents unsure what to believe and doctors frustrated with a lack of options.

But an unusual partnership between science, business and philanthropy may soon provide some answers. Autism Speaks, Google and geneticist Dr. Stephen Scherer have devised an ambitious plan to upload the complete genomes of 10,000 autistic patients and their families to a cloud database that will be searchable, sortable and shareable with researchers around the world. The plan, known as the Autism Speaks Ten Thousands Genome Program—or AUT10K—aims to harness the combined power of big data, crowdsourcing and genetic know-how to isolate the causes of autism and find new genetic targets for treatment.

If successful, the $50 million project could not only help doctors understand and treat autism but change the way illnesses are tackled in the 21st century.

Despite the best efforts of world-class scientists, the research on autism so far has only hinted at its roots and possible cures, said Bob Wright, co-founder of Autism Speaks. “We have raised money for the National Institutes of Health for the better part of 10 years, and they have already spent about $2 billion of it, and we still don’t have any breakdown of autism,” he said, referring to NIH. “They’re sort of nibbling outside the palace, and they can’t get in.”

“I think that this will open up a whole world of autism research,” he said. “Hopefully, we’re going to save 25 years of research in a matter of 18 to 24 months.”

Already the project is paying dividends. Later this year, Dr. Scherer will be publishing a paper based on an analysis of the first few thousand genomes to be uploaded that shows, as expected, that autism consists of more than a single condition.

Unlocking the mysteries of autism

“We have new, unpublished data that shows autism is really a collection of different disorders,” said Dr. Scherer, director of the Centre for Applied Genomics at Toronto’s Hospital for Sick Children. “This is so much the case that even in families where siblings have autism, they often have different forms of the condition and therefore need to be treated in a manner specific to their sub-type.”

This is big news for people struggling with autism, which has the unfortunate distinction of being a spectrum disorder—meaning it is characterized by a range of symptoms that may or may not stem from a singular cause.

“A spectrum disorder is the kiss of death for pharmaceutical companies,” Wright said. “They’ll say to me, ‘That’s too much work; we’re not going to tackle that.'” While this first paper may not be enough to guide the production of new treatments, it is, by any estimation, a major step forward.

Scientists have long believed that studying genes is the key to understanding disorders like autism, Down’s Syndrome and Alzheimer’s. By seeing which gene mutations are shared by people with a certain condition, researchers can isolate the causes of the disease and design drugs to treat it.

But that is easier said than done. The complete human genome contains close to 25,000 genes and takes up about 100 gigabytes of storage—the equivalent of 10 high-definition movies—when uploaded to a computer. Storing, much less analyzing and sharing, all that information is far beyond the capacity of most universities and research institutions.

Enter Google and its seemingly limitless computing capacity. About a year and a half ago, David Glazer, a Google engineering director in search for a new challenge, formed a team within the company to find life-science projects that could benefit from using its cloud platform, which was designed to store and analyze massive data sets. Autism Speaks, which had already been collecting genomes from patients and their families for 15 years, seemed the perfect fit.

“Part of Google’s business is to make our cloud platform useful and available to anyone who has hard, scalable information and data problems to solve,” Glazer said. But “until fairly recently, a biologist didn’t need a tool more powerful than Excel to work with all the data that they were able to gather. That’s changed, particularly with the advent of genomics and genomic sequencing. “This is a tremendous opportunity to really put our platform to use,” he added, “and, of course, being a great customer for our platform.”

That the lead researcher for Google’s first life-science client should be Dr. Scherer makes some historical sense. His signature work greatly contributed to the massive increase in data now produced by many geneticists.

In 2004, Dr. Scherer discovered a major form of genetic variation that researchers had previously overlooked. For decades, scientists had believed that all people were born with two pairs of every gene—one from their father and one from their mother. But using a new form of high-resolution scanning technology that allowed him to examine DNA more closely than ever before, Scherer and his colleagues found that people can have three copies of a gene, or one, or even none at all. Sometimes these copy number variants, as they are known, make no difference to a person’s development. Other times they lead to serious developmental conditions, such as autism.

“Some genes are fine in only one copy, and some are fine in zero copies, believe it or not,” he said. “But there are a set of genes that if you only have one copy, or three copies, anything away from the typical two, it causes developmental problems. And that’s what we’ve seen in autism.”

Large-scale genome sequencing

Dr. Scherer’s research—for which he was named a possible recipient of the 2014 Nobel Prize in Medicine—”opened up a new area of inquiry” in autism research, said Dr. Lonnie Zwaigenbaum, a pediatrician and autism researcher at University of Alberta. “It’s really because of that work that’s laid the groundwork for the advances that comprise the autism 10K project,” which he said had “tremendous potential to accelerate progress.”

An Ontario native, father of two and avid hockey fan, Scherer talks about AUT10K as a dream come true for a scientist used to working—and sometimes straining—within the bounds of conventional research.

“As a grad student 20 years ago, I used to dream about this technology,” he said. “We did this poor man’s science for so long, looking at little snippets, snapshots of the genome trying to figure out what it meant. We’re doing now what I call the perfect genetic experiment.”

Autism Speaks is not the only group pursuing a cure for a disease through large-scale genome sequencing. Earlier this year, the NIH awarded a $12.6 million grant to five American universities, including the Boston University School of Medicine, Columbia University and the University of Pennsylvania, to analyze whole genome sequences of Alzheimer’s patients. In 2011, the Mayo Clinic announced an effort to sequence the genomes of thousands of its patients; it later selected Complete Genomic to do the actual sequencing.

But they do think they can be the first to show large-scale results. “We’re working fast, nimble,” Scherer said. “We’re following the Google model, so I think we’ll be first.”

Scherer and Autism Speaks hope to have all the genomes uploaded to Google’s cloud database by the end of 2015. Meanwhile, Google is at work on interfaces that will allow both researchers and families to search and analyze the data.

If all goes to plan, said Wright, who co-founded Autism Speaks after his grandson was diagnosed with autism, the treatment outlook for autistic patients will look very different two years from today.

“We’re going to have a lot of interest on the part of pharmaceutical companies and treatment organizations” once they have genetic targets and a breakdown of the disease, he said. “So to me this is heaven. This is heaven.”

—By Douglas Quenqua, special to CNBC.com

 

To see the original article on cnbc.com click here.

Stepping Up to Cover Autism Treatment

When Bobbie and Kyle Robinson’s son Samuel was born in 2012, both had good jobs and good insurance: She is a teacher and he is director of operations for a university basketball program. The future looked bright for the young, growing family, but everything changed the following year when Samuel was diagnosed with autism.

The Robinsons learned their health insurance wouldn’t cover his treatment, which costs about $60,000 a year, leaving them scrambling to find the money. They took out a loan, borrowed heavily from their parents and held a fundraiser. Bobbie Robinson’s father even postponed his retirement to help with their medical bills.

They managed to scrape up the money, but Bobbie Robinson was forced to go on medical leave so she could shuttle Samuel to therapy five days a week — a total of more than 300 miles.

“We’ve paid for health insurance for years, and when we really needed it, we found out that we don’t have it,” said Kyle Robinson, director of basketball operations at East Carolina University in Greenville, North Carolina. “That’s an extra level of stress for families. We found a way this year but eventuallyresources dry up.”

Kyle Robinson’s employer, the state of North Carolina, does not offer employee benefits that cover autism therapy, but a growing number of large private employers such as American Express Co., Capital One Financial Corp., JPMorgan Chase & Co. and United Technologies Corp. are extending their health plans to include comprehensive coverage for autism. With 1 in 68 children receiving a diagnosis of autism spectrum disorder, according to the U.S. Centers for Disease Control and Prevention, the number of autistic children has grown dramatically in the past few decades.

Not surprisingly, more employees are asking for benefits that cover autism treatment, said Lorri Unumb, vice president of state government affairs for Autism Speaks, an advocacy group based in New York.

“There’s been a huge spike in the number of companies offering coverage,” she said. Sheattributes the increase in part to the growing number of states that are passing laws requiring insurers to cover autism treatment. Currently, 37 states have laws in place, according to Autism Speaks. Indiana was the first to pass autism insurance legislation in 2001.

While most insurance plans cover someautism therapies, like speech, physical and occupational therapy, few fully funded plans offered by smaller employers cover appliedbehavioral analysis, or ABA therapy, which is one of the most effective — though costliest — treatments for autism. This is the treatment Samuel Robinson receives.

While state laws don’t apply to self-funded insurance plans, large companies are stepping up voluntarily. Among large self-funded employers, 82 percent offer autism coverage, according to Mercer’s 2013 National Survey of Employer-Sponsored Health Plans.

“Employers have been very receptive,”Unumb said. “In the self-funded world, many companies pride themselves on having excellent benefits to stay competitive.”

In January, JPMorgan Chase began offering autism benefits through its health plan, covering intensive behavior therapy, such as the costly ABA therapy.

Stephen Cutler is JPMorgan Chase’s general counsel and an adviser to Access Ability, the company’s employee resource group for workers with disabilities. In a written statement, he said: “With almost 160,000 employees enrolled in our U.S. medical plan, we are confident that this important new offering will change the lives of many of our employees.”

The Robinsons may get some relief as well if the North Carolina state Senate approves a pending bill requiring insurers to cover the diagnosis and treatment of autism spectrum disorder. The bill would cover screening,diagnosis and a variety of therapies including applied behavioral analysis, which would be covered up to $36,000 a year.

“Obviously, it’s going to pay a significant portion of our son’s therapy,” said Kyle Robinson. “We’d have to sell our house otherwise, and our wedding bands, to get the therapy he needs. We’ve seen so much improvement that we can’t not do it for another year.”

 

To read the original article, visit the link below.

http://www.workforce.com/articles/20853-stepping-up-to-cover-autism-treatment