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Daniel Giles is a member of the Autism Future Leaders program. Source: Supplied
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LET me tell you a bit about my life. I was diagnosed with autism when I was two-and-a-half years old. As a child, I had severe language delays and felt as if I was living behind a glass wall, as if my life was like a video that I starred in, but I had no control over.
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My severe communication delay (as well as appearing to have an intellectual disability) meant I attended the Bendigo Special Developmental School for much of my primary school years.
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But I graduated from there in grade 5 and attended the mainstream primary school. With the amazing support of my integration aide, teachers and family (who all wanted me to reach my full potential), I completed my secondary education through to year 12 before completing my Bachelor of Graphic Design (with Honours) at La Trobe University in Bendigo.
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I now live independently and work as a freelance graphic designer, as well as working part-time as an in-house graphic designer and photographer for a local business in Bendigo.
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I believe that what I have achieved shows what can be done when people living with autism are able to reach their potential. And that’s why Thursday’s official launch in Canberra of the world’s first Autism Co-operative Research Centre is so important.
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Autism CRC is the world’s first national co-operative research program for Autism Spectrum Disorders. Government, universities, research centres and not-for-profit organisations will work towards solutions for people living with what is a complex and challenging condition.
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How complex and how challenging? I am so grateful for my life but it is difficult sometimes. I have high anxiety levels while navigating the world around me, and that has impacted on my ability to manage clients. I’m also stressed easily by changes of plans, a busy environment or an overload of information.
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So I’d like to see research done on what would benefit those of us on the autism spectrum, including research into educating people on the spectrum and preparing for transition and independent living. I’d also like to see research on helping with the management of meltdowns, providing quiet spaces in public venues and on business owners being better able to communicate with people on the spectrum.
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I believe researching how employers could cater to the needs of people with autism should also be a high priority.
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My biggest hope, though, is that the Autism CRC avoids research that focuses on eugenics and any potential of eliminating people with autism. Instead, it should be focusing on helping people on the spectrum become the best they can possibly be.
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That is relevant given that autism can now be detected at one year of age or earlier, once the genetic code is identified, and that future research may lead to the prenatal identification of autism.
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Read in Full:
Dane Spurrell with his mother, Diane Spurrell. — Telegram file photo
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RNC officers breached regulations in Dane Spurrell case, ruling states
Diane Spurrell filed the original complaint with the RNC Public Complaints Commission following the arrest of her then 18-year-old son, Dane, in Mount Pearl. He was accused of obstructing police officers, who mistakenly thought he was publicly intoxicated while walking home from a video store shortly after midnight on April 19, 2009.
Almost five years later, adjudicator John McGrath has found the two officers involved in the arrest guilty of breaching multiple RNC regulations.
“I think it’s a very fair decision,†Diane Spurrell told The Telegram Monday, the same day she received her copy of the decision. “I’m elated, absolutely elated to finally have it.â€
Const. Lisa Harris — formerly known as Lisa Puddicombe — was the first officer to come in contact with Dane Spurrell that night. McGrath found her guilty of breaching five regulations.
Those breaches are for arresting and detaining Spurrell without sufficient cause, being discourteous towards him, neglecting to promptly and diligently perform officer duties, acting contrary to the RNC policy and procedures manual, and failing to obey RNC regulations, orders and rules concerning policy and procedure.
“We believe in this instance it wasn’t (Spurrell’s) ability to communicate that caused a lot of the problems herein,†McGrath wrote in the decision, “it was a combination of Constable Harris’ frustration believing she was being outwitted by Dane Spurrell, her failure to follow the RNC Policy and Procedures Manual and a significant lack of understanding of the provisions in that manual and ultimately her failure to allow a simple phone call to and with his mother that would have put a stop to the unnecessary turmoil that followed.â€
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Read in Full:

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The Food and Drug Administration (FDA) is considering an important action that would ban the use of devices that use electric shock for behavior modification. This action has the potential to close the Judge Rotenberg Center, an institution in Massachusetts  which uses contingent electric shocks as a method of behavioral control.Â
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The United Nations Special Rapporteur on Torture has declared the use of electric shock as torture, and the U.S. Department of Justice initiated a civil rights investigation into the JRC’s practices. The JRC’s founder, Matthew Israel, was forced to resign after facing charges for destroying video evidence of abuses of the GED electric shock device. Contrary to the JRC’s claims, not only do students receive electric shocks for relatively minor behaviors such as standing up from a desk or swearing as well as for potentially dangerous behaviors, but severe self-injurious and destructive behaviors can be successfully treated using methods other than abuse and torture. In legislative hearings each year on legislation that would ban the shocks, professionals with expertise in developmental and intellectual disabilities testify about the ineffectiveness of electric shock and the myriad options for addressing problematic behavior other than electric shocking. There are no scientific, peer-reviewed studies that show any long-term efficacy of electric shock as a treatment, but there are documented cases of former JRC students receiving diagnoses of post-traumatic stress disorder after leaving the JRC.
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We need to assure the FDA receives as much written testimony as possible regarding this issue. The deadline for submitting statements is this Monday, April 14th.
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Your written statement can be any length and can contain any information you want – your opinion about the use of electric shock for behavior modification, other ways of supporting people who have dangerous or difficult behaviors, issues of ethics and rights, research, etc. All comments are important and welcome.
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Comments can be received on or before April 14th, and can be submitted electronically by April 14th here.
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Click on the link above and you will receive a form. You can type (or copy and paste) your statement there or upload a document. You can choose to give contact information or to submit anonymously.
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Your statement must be received by April 14th.

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There are millions of Americans with disabilities lacking adequate health care because of a lack of primary care providers who are properly trained to treat them. In 2000, Healthy People 2010 cautioned that “as a potentially underserved group, people with disabilities would be expected to experience disadvantages in health and well-being compared with the general population.†Unfortunately, that statement continues to be correct. In particular, people with intellectual and developmental disabilities (I/DD) remain subject to significant health care disparities.
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Right now, people with ID/DD are not included in the federal government’s definition of Medically Underserved Populations (MUP). That is why it is very important that awareness of this issue be spread so that the Health Resources Services Administration can take action to include people with ID/DD in the MUP definition. Failing that, Congress should act to ensure this community’s inclusion in the official definition. By including people with I/DD in the federal definition of a Medically Underserved Population, people with intellectual and developmental disabilities will have access to better quality health care and better quality of life.
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For more information, you can read ASAN’s policy brief here.
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Thanks to generous support from:


Friends,Â
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The Disability Rights Network of Pennsylvania has given us this important information about the Healthy PA 1115 Waiver. Healthy PA is the plan proposed by the state under the Affordable Care Act instead of expanding Medicaid. You will be able to submit your thoughts about Healthy PA before it is finalized. There are some serious concerns about what these changes will mean, so it is very important that your comments are included. We’ve given you some suggestions and guidelines for submitting comments below.
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Last month, the Department of Public Welfare sent in the final version of Healthy PA to the Centers for Medicare and Medicaid Services. Healthy PA explains the Department’s plans to do two things.Â
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(1) To limit the current Medicaid program.Â
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(2) To give Medicaid to a group of uninsured adults ages 21 to 64. This group is anybody who makes less money than a level set by the government, and who would not be able to get Medicaid another way. You can see the Draft 1115 Waiver application here.Â
It is important for the disability community to send in comments about Healthy PA to the Centers for Medicare and Medicaid Services. The last day to send in comments is Thursday, April 10, 2014 by 11:00 PM. There is more information about how to send in comments below.
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There are a few main areas of concern that we would recommend including in your comments. These are:
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- *The Elimination of MAWD
- * Caps on things; targeted examples: *Loss of access to LTSS (Long Term Supports and Services) for those 133%-250% of FPL because of the MAWD cut, which prevents those with LTSS needs from moving out of poverty.Â
- ~Durable medical equipment ($2.5k/year on high risk plan)
- ~access to mental health care
- *There are no caps on nursing home or institutional settings, which could push those whose needs exceed the caps into more restrictive settings.
It is important for the disability community to submit comments on Healthy PA. Written comments must be submitted to CMS by 11:00 PM on Thursday, April 10, 2014 Written comments may be submitted here or emailed to 1115DemoRequests@cms.hhs.gov. CMS will review and post comments received, but will not respond to each individual comment.Â
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More information about Healthy PA can be found at the Disability Rights Network of Pennsylvania’s website here.
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IF YOU HAVE QUESTIONS:
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Questions or comments may be directed to Savannah Logsdon-Breakstone, at SBreakstone@autisticadvocacy.org.

Autistic Self Advocacy Network Issues Statement on Latest CDC Autism Prevalence Data
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Latest CDC numbers reflect better understanding of autism; racial and gender disparities persist.
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Washington, DC — March 27th, 2014 — The Autistic Self Advocacy Network issued the following statement in response to the unveiling of new data on the prevalence of Autism Spectrum Disorders (ASD) by the Centers for Disease Control (CDC) today.
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“These numbers are in line with our expectations based on previous studies showing that autistic people represent between 1 and 3% of the population,†said ASAN President Ari Ne’eman. “The CDC numbers show that while we are gradually improving diagnosis and identification of autistic people, significant disparities persist. African-American and Hispanic autistic children continue to go under-diagnosed, as do women and girls on the spectrum.â€
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According to the latest CDC data, approximately 1 in every 68 children in the United states is on the autism spectrum. However, vast diagnostic disparities exist–boys were 4-5 times more likely to be diagnosed than girls, with a prevalence rate of 1 in 42 for boys compared to a rate of 1 in 189 girls. In addition, girls who received an ASD diagnosis were more likely than boys to have been identified as having an additional disability, implying that less obvious cases were being missed. This data supports previous studies which showed gender disparities in diagnosis to be largely a problem of identification, as opposed to indicative of lower occurrence.
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Nor were diagnostic disparities restricted to gender. White children were approximately 30% more likely to be identified with ASD than black children and were almost 50% more likely to be identified with ASD than Hispanic children. Children of color, when diagnosed, were more likely to be identified as having additional disabilities. These alarming disparities indicate that while improvements in diagnosing autism have been made for some populations, considerable efforts are still needed to make diagnosis and services available to all.
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“This disparity data highlights the need for serious action to ensure progress in autism diagnosis and services is available to all, regardless of diagnosis or gender,†said ASAN’s Director of Programs, Julia Bascom. She went on to add, “The lack of any data on adults represents a serious gap in CDC’s efforts. When the United Kingdom conducted an adult prevalence study, it found the same rate of autism in adults as children, helping to debunk public hysteria over a so-called ‘autism epidemic’.â€
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The Autistic Self Advocacy Network is a 501(c)(3) nonprofit organization run by and for Autistic people. ASAN’s supporters include Autistic adults and youth, cross-disability advocates, and non-autistic family members, professionals, educators and friends. Its activities include public policy advocacy, community engagement to encourage inclusion and respect for neurodiversity, leadership trainings, cross-disability advocacy, and the development of Autistic cultural activities.
ASAN Unveils Toolkit for Advocates on Ending Discrimination in Organ Transplantation
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ASAN has prepared a comprehensive toolkit to empower people with disabilities, their families, and other disability advocates to help combat disability-based discrimination in organ transplantation.
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As ASAN found in our 2013 report, when people with intellectual and developmental disabilities need an organ transplant to treat a life-threatening condition, they frequently face barriers to receiving this lifesaving care. Doctors and transplant centers may refuse to approve organ transplants for people with disabilities who might need help in order to follow complicated post-transplant treatment plans. Others may refuse to approve transplants for people with disabilities based on the belief that, when deciding who should receive an organ transplant, people without disabilities should have a higher priority.
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ASAN’s toolkit on ending discrimination in organ transplantation provides resources for advocacy both on an individual and a system-wide basis.
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- *The “Know Your Rights†guide provides people with disabilities and their families with information on existing laws and policies that may protect them from discrimination, and information on who to contact if they experience discrimination.
- *The Guide for Advocates provides information on ways that advocates can help fight organ transplantation discrimination on a wider basis, such as through legislative advocacy and outreach to the medical community.
- *The Model Legislation on organ transplant discrimination provides an example of effective anti-discrimination legislation that advocates can propose to their state legislatures.
- *The Guide for Clinicians and Checklist of available supports and services gives doctors and other health professionals concrete advice on how to serve people with disabilities who may need an organ transplant.
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ASAN’s toolkit on organ transplantation is the first of four upcoming toolkits for advocates on health care issues facing the disability community. These toolkits were made possible by funding from the Special Hope Foundation.
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We hope that you find our toolkit useful and distribute it widely. Please send any concerns, feedback, or comments on how you plan to use the toolkit to ASAN’s Director of Public Policy, Samantha Crane, at scrane@autisticadvocacy.org.
Mar
7

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Dear friends,
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Nine years ago, Congress passed the Combating Autism Act (CAA), legislation that focused federal autism research and policy activities on creating a world without autistic people. In 2011, Congress re-authorized this deeply flawed legislation, over the objections of self-advocates and our families. Now, with the CAA set to expire this year unless Congress re-authorizes it, we finally have an opportunity to change things.
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ASAN is working to try and reform CAA to align its goals with those of the Autistic community. Federal autism legislation should follow the example of the Americans with Disabilities Act and the Developmental Disabilities Assistance and Bill of Rights Act. We deserve a bill that’s about supporting Autistic Americans, not combating us. Today, only 1.5% of NIH’s autism research funding goes towards the needs of adults and only 2.4% towards improving the quality of services. By re-allocating more funds to services and adults, we can help empower autistic people and our families.
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Unfortunately, the usual suspects are lobbying to re-authorize the Combating Autism Act at all costs, even if changes aren’t made to fix the problems hurting self-advocates and our families. That’s why we’re asking you to join us by signing this action alert, sending a message to your congressional delegation about why we need to reform CAA.
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Here’s what you can do:
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1) Sign our action alert to contact your Members of Congress and ask them to support reforming the Combating Autism Act to make it about supporting autistic people, not “combating” us. Share our action alert with your friends, family and networks to help us get this message out far and wide.
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2) Post on social media about why you believe CAA has to be reformed using the hashtag #StopCombatingMe – this can be a good way to tell your friends and family about our action alert or to tweet or post to the pages of your Members of Congress to let them know why changing the Combating Autism Act is so important.
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3) Consider making a donation to support our advocacy work on this and other critical issues. If you can afford it, make a recurring contribution to support our advocacy over the long haul.
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With the re-authorization bill set to be introduced within the next few weeks, it’s critical that your Members of Congress hear from you now. Will you help us?
Thank you for your support and, as always, Nothing About Us, Without Us!
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Regards,
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Ari Ne’eman
President
Autistic Self Advocacy Network
Mar
4

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Last Saturday, I stood in a park across from the Capitol Building, surrounded by my community, as we read a list of names. I could have sworn time stopped; we read down one poster, and then another, and every time I thought we were done, there were more names. I remember thinking, last year we only needed one poster.Â
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The list of names was a list of disabled people who were murdered by their parents and caregivers. The youngest person was six months old. We’ve been making this list for three years; every year, more disabled people are murdered by the people they trusted the most, and every year, we find new names from previous years. Even this year, when the list of victims can no longer fit on one poster, we know we missed people.Â
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How does a community heal from something like this?
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As I stood in the park, I took strength in the fact that I was not alone. I was gathered with my community; across the country, 24 other vigils were happening. Disabled people, our loved ones, and our friends and allies stood together, mourned together, and called for justice together. This wasn’t my pain alone–this was our pain. We felt it together, all across the globe, and we could do something about it, together. And that’s the thing. We can do something about it.
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It starts simply. It starts with remembering our dead. It starts with mourning, and it starts with saying, this is not okay. You cannot do this to us. It continues with demanding that our murders be prosecuted to the fullest extent of the law, that our victims not be blamed for our own murders, and that our lives as disabled people be fully and equally valued. It requires having blunt conversations about the way our society devalues and disposes of disabled people, and it requires all of us to stand together and demand an end.Â
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It’s a huge undertaking. It’s overwhelming, and it’s terrifying. And it’s absolutely doable.
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My heart aches for the year when we have no new names to add to the list. But I think about the strength and the resilience of my community, and I know: we can get there. We can stop this.
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To everyone who came out to the vigils this year: thank you. To everyone who took time out of their lives to organize a vigil: thank you. To everyone who joins us, every time our community loses another life, in saying enough: thank you. There were more vigils this year than there have ever been before, and they were stronger and better organized. So are we.Â
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We can stop this.
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Julia Bascom
Director of Programs
Autistic Self Advocacy Network
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This Saturday, March 1, is the 2014 Day of Mourning – a day when the disability community around the country will gather to mourn and cherish the memories of those we have lost to senselessness violence at the hands of those closest to us, to bring awareness to this ongoing tragedy, and to demand equal rights, protection and justice for all citizens.
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In the past five years, over forty people with disabilities have been murdered by their parents. In the year since our last vigil, our community has lost at least ten more victims. In January of 2014 alone, two more disabled people were lost in murder-suicides at the hands of their parents: Damien Veraghen, age nine, and Vincent Phan, age twenty four.
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These acts are horrific enough on their own. But they exist in the context of a larger pattern. A parent kills their disabled child. The media portrays these murders as justifiable and inevitable due to the “burden†of having a disabled person in the family. If the parent stands trial, they are given sympathy and  comparatively lighter sentences, if they are sentenced at all. The victims is disregarded, blamed for their own murder at the hands of the person they should have been able to trust the most, and ultimately forgotten. And then the cycle repeats.
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For the last three years, ASAN, ADAPT, Not Dead Yet, the National Council on Independent Living, the Disability Rights Education & Defense Fund, and other disability rights organizations have come together to mourn those losses, bring awareness to these tragedies, and demand justice and equal protection under the law for all people with disabilities. Tomorrow, we will come together again, and we ask you to join us.
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Current vigil sites and contact information can be found on the ASAN website.
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Sacramento, CA
Shyanna Mendes, asansacramento@gmail.com
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San Francisco Bay Area, CA
Brent White, brent@alacosta-acat.com
Rob Gross, rgross@esoftltd.com
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Fort Myers, FL
Suzanne Fast, sfeaal@yahoo.com
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Atlanta, GA
R. Larkin Taylor-Parker, larkin92@comcast.net
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Chicago, IL
Carrie Kaufman, CKaufman@accessliving.org
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Boston, MA
Andrew De Carlo, ardecarlo@gmail.com
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Baltimore, MD
Amanda Mills, muchbrighter2@gmail.com
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Towson, MD
Rhonda Greenhaw, rjgwood@gmail.com
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Houghton, MI
Caroline Maye, cnmaye@mtu.edu
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Missoula, MT
Mike Beers, mbeers@summitilc.org
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Robbinsville, NC
Carol Sutton, mountain_crafter@msn.com
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Lincoln, NE
Sharon DaVanport, sdavanport@gmail.com
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Woodbridge, NJ
Evelyn Delgado, joyzee_devil@yahoo.com
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Reno, NV
Brianna Hammon, csdlibrary@gmail.com
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New City, NY
Jason Ross, jason_s_ross@yahoo.com
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New York City, NY
Cara Liebowitz, caraliebowitz@gmail.com
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Rochester, NY
Diane Coleman, dcoleman@notdeadyet.org
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Syracuse, NY
Alex Umstead, aumstead@syr.edu
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Eugene, OR
Amber Perry, asperamber@gmail.com
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Portland, OR
Theresa Soto, tisoto@gmail.com
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Pittsburgh, PA
Lauren Stuparitz, lestuparitz@gmail.com
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Seattle, WA
Matt Young, indigowombat@yahoo.com
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Washington, DC
Melissa Mooney, mmooney6@masonlive.gmu.edu
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Halifax, Nova ScotiaÂ
Leah Andrews, landrews@nexicom.net
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Virtual vigil, for those unable to attend a local vigil.




