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Disorders of the Developing and Aging Brain: Autism and Alzheimer’s on the Web

Collected by: National Library of Medicine

Archived since: Jan, 2014

Description:

Collection of websites crawled that represent a sample of available web resources related to Autism Spectrum Disorder and Alzheimer's Disease in 2013.

Subject:   Science & Health Society & Culture Blogs & Social Media Alzheimer's Disease Autism Spectrum Disorder

Page 1 of 1 (60 Total Results)

Title: A Diary of a Mom

URL: http://adiaryofamom.wordpress.com/

Description: A Diary of a Mom author Jess is a Boston-area parent with two daughters, one neurotypical and one autistic. The blog chronicles her experiences raising both children with her husband and the special challenges presented by her younger daughter's autism.

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Title: National Plan to Address Alzheimer's

URL: http://aspe.hhs.gov/daltcp/napa/NatlPlan2013.pdf

Description: Most recent update on the National Plan to Address Alzheimer's (an intiative that came out of the National Alzheimer's Project Act in 2011), including research outcomes and action items.

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Title: Autism Daddy

URL: http://autism-daddy.blogspot.com/

Description: Autism Daddy, an anonymous blogger, has a 10 year old son with severe, non-verbal autism. His blog provides the unique perspective of a primary caregiver father, and the caregiver to a child with severe, "classic" autism. In addition to blogging about his son, he also writes about the effects of having a special needs child on marriage and other relationships.

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Title: Autism - Day by Day

URL: http://autismdaybyday.blogspot.com/

Description: Written by a single mother in the Los Angeles area, "Autism Day By Day" chronicles her life as the caregiver to her 15 year old autistic son, Nick. The blog is from the unique perspective of the mother of a pubescent child with autism and the challenges that come along with it.

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Title: Confessions of a Teenage Aspie

URL: http://confessionsofateenageaspie.blogspot.com/

Description: The self-described "Aspie" (person with Asperger's) blogger is in her late teens and recently started at college. Her blog provides a front-row seat to the challenges of being a teenager with Asperger's who is just starting to live independently.

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Title: Creating Memories/Dealing with Alzheimer's

URL: http://creatingmemories.blogspot.com/

Description: Written by blogger Kris, a 54 year old woman with early onset Alzheimer's. The blog was started shortly after she was diagnosed in 2003.

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Title: Watching the Lights Go Out

URL: http://davidhilfiker.blogspot.com/

Description: Hilfiker is a retired physician living in the Washington, DC area who was diagnosed with mild cognitive impairment in 2012. His blog details his journey with the disease and how is memory loss effects his life now.

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Title: FTD/Dementia Support Blog

URL: http://earlydementiasupport.blogspot.com/

Description: Blogger Howard was diagnosed with Frontotemporal Dementia nine years ago after being misdiagnosed with bipolar disorder. His blog, in existence since 2011, offers a unique voice in this area.

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Title: Emily a la Blog

URL: http://emuf.blogspot.com/search/label/Alzheimers/

Description: Written by a young woman in the Pacific NW. This section of her personal blog chronicles her mother's decline during her life with early-onset Alzheimer's. Her mother was diagnosed in her 50s and died in 2013.

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Title: Flappiness Is…

URL: http://flappinessis.com/

Description: Written by a school media specialist with two children (one neurotypical, one with ASD), the author blogs about life with a young child on the spectrum. She also includes reviews of books and resources for parents and caregivers.

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Title: HHS Interagency Autism Coordinating Committee's Summary of Advances page

URL: http://iacc.hhs.gov/summary-advances/2012/index.shtml

Description: The Interagency Autism Coordinating committee is a group set up by the US Department of Health and Human Services. The report on this page indexes all of the recent research (since the committee's inception) and breaks it down into several categories for ease of use.

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Title: Just Stimming

URL: http://juststimming.wordpress.com/

Description: Written by a young adult with mild autism/Asperger's, this blog features essays related to many aspects of life with autism and clearly shows the perspective of someone suffering from--and surviving--life with autism.

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Title: Memories from my Life

URL: http://memoriesfrommylife.wordpress.com/

Description: Blogger Pat White's mother suffered from Alzheimer's for years before passing away in August 2011. Since then, White has been a caregiver advocate. The blog began in 2009 as a vehicle for White to express her thoughts on her mother's progress and the disease.

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Title: A Blog Inspired by Mom's Brain

URL: http://momsbrain.wordpress.com/

Description: Written by Emily Caldwell, whose mother has Alzheimer's. Her mother was diagnosed in 2005 and lives in a nursing home today. She has been writing the blog since 2008, and it chronicles her mother's changing state and its impact on her as a primary (and then secondary) caregiver.

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Title: National Autism Association

URL: http://nationalautismassociation.org/

Description: The National Autism Association, a parent-run 501c(3), is one of the leading autism advocacy and education groups in the nation. Their website includes information about autism writ large, treatment, and support, among other things.

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Title: National Autism Association's Causes page

URL: http://nationalautismassociation.org/about-autism/causes-of-autism/

Description: There are many potential causes of autism, nearly all of which are highly controversial. The National Autism Association outlines some of the most common theories, and links to other pages with potential causes.

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Title: NatKat Official Blog

URL: http://natkat921.blogspot.com/

Description: The NatKat blog is writing by a young woman with Autism Spectrum Disorder who began college in 2013. The blog chronicles her life as an autism patient and advocate, as well as college student and young adult.

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Title: What is Alzheimer's?

URL: http://nihseniorhealth.gov/alzheimersdisease/whatisalzheimersdisease/01.html

Description: Web resource from the National Institutes of Health Senior Health Center that describes Alzheimer's, its causes and prevention, treatment and diagnosis, and other aspects of the disease.

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Title: Are You On It?

URL: http://nymag.com/news/features/autism-spectrum-2012-11/

Description: This article from the popular discusses the expanding diagnoses of "Autism Spectrum Disorder" in long-form journalism.

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Title: Sharing My Life With Lewy Body Dementia

URL: http://parkblog-silverfox.blogspot.com/

Description: Written by anonymous blogger "Silverfox," a retired Navy Master Chief Gunner's Mate with Lewy Body Dementia sufferer, this blog chronicles life with a lesser-known form of dementia. The decline is slow, and the blog focuses on his changing life with the disease.

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Title: Living in the Shadow of Alzheimer's

URL: http://sherizeee.blogspot.com/

Description: Blogger Sheri has been writing about her experiences caring for her husband with Alzheimer's since 2010. Her posts are relatively short, and often involve poetry.

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Title: Susan Senator's Blog

URL: http://susansenator.com/blog/

Description: Susan Senator has been blogging for over five years, making her one of the most seasoned autism caretaker bloggers. Her autistic son is now in his early 20s, and her blog is from the perspective of the caregiver of a young adult with autism.

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Title: The Autism Blog

URL: http://theautismblog.seattlechildrens.org/

Description: The autism-specific blog of Seattle Children's Hospital provides readers with an overview of ASD-related developments and provides resources for patients and caregivers.

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Title: Vicki's Voice: Sharing My Life With Frontotemporal Dementia

URL: http://vickisvoice.tv/

Description: Blogger Vicki was diagnosed with Frontotemporal Dementia in 2009 and has maintained this blog since then. It chronicles her life with the disease, and her decline. Some posts are contributed by a close friend and sometimes-caregiver.

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Title: Alzheimer's Myths

URL: http://www.alz.org/alzheimers_disease_myths_about_alzheimers.asp

Description: Webpage debunks several popular creation myths related to Alzheimer's, with citations to journal articles about each alleged cause. These include the aluminium, flu shot, aspartame, and teeth fillings theories, among others.

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Title: Alzheimer's Association: Latest Treatments

URL: http://www.alz.org/alzheimers_disease_treatments.asp

Description: Resources on this page summarize the treatments currently available for Alzheimer's Disease patients, from memory loss to sleep changes.

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Title: What is Alzheimer's?

URL: http://www.alz.org/alzheimers_disease_what_is_alzheimers.asp

Description: Basic page from the Alzheimer's Association that describes Alzheimer's, its diagnosis and treatment, and how to identify it. Includes significant resources for sufferers and caregivers.

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Title: 2013 Alzheimer's Disease Facts and Figures

URL: http://www.alz.org/downloads/facts_figures_2013.pdf

Description: 2013 report from the Alzheimer's Association that recounts facts and figures about Alzheimer's as it exists now.

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Title: Alzheimer's Association Research Center

URL: http://www.alz.org/research/overview.asp

Description: The research branch of the Alzheimer's Association, which publishes and funds research related to the disease.

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Title: The Search for Alzheimer's Causes and Risk Factors

URL: http://www.alz.org/research/science/alzheimers_disease_causes.asp

Description: Web resource summarizing the known causes and risk factors for Alzheimer's. The page contain several videos (embedded) explaining the implications of each.

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Title: Help with Alzheimer's

URL: http://www.alzheimers.gov/help.html

Description: Page from alzheimers.gov about how to find and select an Alzheimer's caregiver or caregiver team. Includes many resources regarding eldercare in America.

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Title: How to Plan and Pay Ahead

URL: http://www.alzheimers.gov/how_to_pay.html

Description: Page from alzheimers.gov that deals with the financial and legal aspects of Alzheimer's care and treatment.

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Title: Autism Society's About Autism page

URL: http://www.autism-society.org/about-autism/

Description: Another of the leading American non-profits that addresses autism, the Autism Society, has extensive information about autism now, including information on symptoms, diagnosis, causes, and facts and statistics.

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Title: Autism Society Research page

URL: http://www.autism-society.org/research/

Description: The research page of the Autism Society's website aggregates some current research around two of the more promising areas in autism research: the Treatment Guided Research Initiative, and the Environmental Health Initiative.

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Title: Autism Treatment Network

URL: http://www.autismspeaks.org//science/resources-programs/autism-treatment-network/

Description: The Autism Treatment Network is hosted on the Autism Speaks website and includes information about treatment centers across the United States, as well as pertinent information about treatment methods and options.

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Title: Autism Speaks' What is Autism? Page

URL: http://www.autismspeaks.org/what-autism

Description: Autism Speaks is one of the main US-based, autism non-profits.

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Title: Autistic Hoya

URL: http://www.autistichoya.com/

Description: This blog is written by a young, autistic woman about her experiences and advocacy. She is a self-advocate and deeply involved in the larger autism advocacy community.

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Title: Alzheimer's Disease and Caregiving

URL: http://www.caregiver.org/caregiver/jsp/content_node.jsp?nodeid=567

Description: Page from the Family Caregiver Alliance, a non-profit organization that provides information and support for caregivers to people with all varieties of illnesses. Includes information and guidelines about what might be appropriate care in every stage of the disease.

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Title: Healthy Brain Initiative Roadmap

URL: http://www.cdc.gov/aging/pdf/2013-healthy-brain-initiative.pdf

Description: Initial report from the Health Brain Initiative that lays out a roadmap for Alzheimer's research from 2013-2018. Also contains extensive cited resources that would be of potential interest to researchers.

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Title: CDC Features: Alzheimer's

URL: http://www.cdc.gov/features/alzheimers/

Description: CDC website that discusses Alzheimer's. Includes many resources from NIH and other government and non-governmental entities regarding caregiving, signs and symptoms, and other aspects of the disease.

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Title: CDC's Learn the Signs. Act Early.

URL: http://www.cdc.gov/ncbddd/actearly/index.html

Description: The CDC has recently started a campaign called "Learn the Signs. Act Early." that is meant to educate paretns and families about the early signs of autism. There is significant evidence that children who have early intervention fare much better, and getting an early diagnosis can be crucial.

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Title: CDC's Autism Spectrum Research & Tracking page

URL: http://www.cdc.gov/ncbddd/autism/research.html

Description: The research on the CDC's ASD Research & Tracking page is fed by a CDC surveillance monitoring system for relevant research tracking. It includes all of the most current research in the United States on ASD.

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Title: Dude, I'm an Aspie

URL: http://www.dudeimanaspie.com/

Description: Blogger Matt Friedman is an Asperger's advocate and cartoonist. He is a young man with Asperger's, and his blog is filled with reflections on ASD policy and experiences, and his own original drawings about the subject.

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Title: Alzheimer's Prevention Initiative

URL: http://www.endalznow.org/

Description: An online registry that promotes and publicizes Alzheimer's prevention trials at various medical institutions. Also includes some resources.

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Title: The 5 Scariest Autism "Treatments"

URL: http://www.forbes.com/sites/emilywillingham/2013/10/29/the-5-scariest-autism-treatments/

Description: This article, from , outlines some of the more dangerous and bizarre alternative treatments that some use on those with autism.

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Title: Go Team Kate

URL: http://www.goteamkate.com/

Description: This blog, written by parents of an autistic girl in the UK, provides several unique features: it documents the experiences of both Kate's mother and father, and tells the detailed story of her diagnosis.

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Title: National Health Service (UK)'s Autism and Asperger's Syndrome: Causes page

URL: http://www.nhs.uk/Conditions/Autistic-spectrum-disorder/Pages/Causes.aspx

Description: This webpage from the UK's National Health Service lays out the potential causes of ASD in a clear and concise format.

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Title: News & Highlights

URL: http://www.nia.nih.gov/alzheimers/news/

Description: Press releases related to research conducted at the National Institute on Aging related to Alzheimer's.

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Title: 2011-2012 Alzheimer's Disease Progress Report

URL: http://www.nia.nih.gov/alzheimers/publication/2011-2012-alzheimers-disease-progress-report/

Description: Report summarizing the progress made in the field of Alzheimer's research over the year and the next priorities.

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Title: About Alzheimer's Disease: Causes

URL: http://www.nia.nih.gov/alzheimers/topics/alzheimers-basics/

Description: Web resource from the National Institute on Aging that delves into the current understanding of Alzheimer's causes.

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Title: Alzheimer's Disease Education and Referral Center: Treatment

URL: http://www.nia.nih.gov/alzheimers/topics/treatment/

Description: This page from ADEAR (an NIH component) delves into various treatment and medication options, and includes numerous resources and fact sheets for referral.

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Title: Preventing Alzheimer's Disease

URL: http://www.nia.nih.gov/sites/default/files/preventing_alzheimers_disease_0.pdf

Description: Pamphlet published by the National Institute on Aging about current theories and methods to minimize Alzheimer's risk.

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Title: NIEHS's Health and Education: Autism page

URL: http://www.niehs.nih.gov/health/topics/conditions/autism/index.cfm

Description: One of the potential causes of autism that is currently being heavily researched involves environmental factors and environmental health. The National Institute of Environment and Health Services has significant information about the work being done on its website.

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Title: NY Times Health Guides: Alzheimer's

URL: http://www.nytimes.com/health/guides/disease/alzheimers-disease/overview.html

Description: Health guide from the NY Times that includes information about what causes Alzheimer's Disease, with helpful graphics and commentary. Well cited.

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Title: Dietary Guidelines for Alzheimer's Prevention

URL: http://www.pcrm.org/health/reports/dietary-guidelines-for-alzheimers-prevention/

Description: Web resource from the Physician's Committee for Responsible Medicine (a DC-based non-profit that advocates for the ethical practice of medicine) that gives recommendations for a diet designed to minimize the risk of Alzheimer's Disease. Well-cited to peer-reviewed literature.

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Title: Center for Autism Research

URL: http://www.research.chop.edu/programs/car/

Description: The Center for Autism Research, located at the Children's Hospital of Philadelphia, is a research institute dedicate to autism. Their page includes information about research being done both at CAR and around the country.

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Title: Organization for Autism Research

URL: http://www.researchautism.org/

Description: The Organization for Autism Research, a non-profit founded in 2001, funds research and studies related to autism in America. Their website includes links to other agencies participating in autism research (including NIH), as well as some of the original research they have funded.

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Title: Diagnosis: Alzheimer's

URL: http://www.rhondabrantley.com/

Description: This blog was created by Rhonda Brantley for her husband, Bill Brantley. Bill was diagnosed in 2007 with early-onset Alzheimer's at 61 and died in 2012. Over time, the blog morphed from Bill to Rhonda posting about caregiver issues.

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Title: The Alzheimer Spouse

URL: http://www.thealzheimerspouse.com/

Description: Blogger Joan is the wife of Sid, an Alzheimer's sufferer. She began the blog in 2007 as an outlet for herself as his primary caregiver, and a place to discuss issues unique to being an Alzheimer's patient's spouse and caregiver. Joan maintains the blog with reflections on the effect of the disease on her life.

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Title: U.S. Court of Federal Claims page on Autism and Vaccines

URL: http://www.uscfc.uscourts.gov/omnibus-autism-proceeding/

Description: A theory that has been popular for well over a decade is that the MMR vaccine, given to young children, causes autism. After years of litigation, the United States government awarded a settlement to some people whose children may have been effected by the vaccine. This page documents the filings, facts, and other relevant information about the case.

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Page 1 of 1 (60 Total Results)