Archived | ‘New’ Autism Speaks Gathers in Capital | Circa March 2007 #NotAnAutisticAlly

‘New’ Autism Speaks Gathers in Capital

Volunteers, Field Staff and Leadership Celebrate Gains of 2006, Plan New Initiatives for 2007

Heeding repeated calls to serve the autism community as “one strong voice,” nearly 240 staff and volunteers of the newly combined Autism Speaks and Cure Autism Now, or CAN, joined forces in Washington, D.C. March 16-20 for their first combined leadership conference.

The Autism Community Is Not The Autistic Community

* The “autism community” is not the Autistic Community. The autism community was created by non-Autistic led organizations and includes mostly parents, professionals and their friends. Most of what the world knows about autism is sourced from the non-Autistic “autism community.”

The gathering, which drew approximately 160 volunteers and 75 staff members from around the country and overseas, among them 80 from the former CAN operation, focused on integrating geographically far-flung teams to work together on the organization’s newly expanded walks, special events, scientific research and awareness efforts. The meeting was scheduled to conclude with a day on Capitol Hill and more than 100 visits with congressional representatives from 26 states.

As Autism Speaks President Mark Roithmayr put it during the gathering:

“Look at us now. … We are coast to coast, we are urban, we are suburban, we are rural. We are one strong voice fighting for one thing. It is about autism.”

The annual meeting comes just one year after the then newly-merged Autism Speaks and the National Alliance for Autism Research, or NAAR, met together for their first organizational leadership conference in the nation’s capital. And much of the celebrating during this several-day conference was over how much the two combined organizations have accomplished since last year.

When Autism Speaks and NAAR merged more than a year ago, “Many of you were no doubt wondering what was in store for you, what was in store for the Walk program, and what was in store for the cause that we are all so devoted to,” remarked Autism Speaks Co-founder Suzanne Wright during a March 16 awards dinner.

“Well, a year later, I think we have our answer. It’s called success. You raised $12 million last year, exceeding our goal by more than $2 million. This is a tremendous accomplishment, and a testament to your commitment and also to the strategic rationale of combining our two strong organizations.”

Awards for Outstanding Contributions

More than 100,000 participants took part in the 53 Autism Speaks walks, noted Lisa Gallipoli, national director of field operations, who presided over an awards ceremony to honor the volunteers and staff who helped raise that $12 million.

Among the awards were for those for 2006’s top three fundraising walks, which alone raised $4 million. The 2006 Long Island Walk came in at No. 1, raising $2 million. The Greater Boston Walk raised $1.1 million, while the Westchester/Fairfield, N.Y. Walk raised $953,000.

Awards were also presented to the top five fundraising teams, led by Team Tyler on Long Island, with more than $200,000 raised, followed by No. 2 Scarsdale C.H.I.L.D. in Westchester/Fairfield at $160,000, No. 3 Cody’s Clan in Greater Boston at $100,000-plus, No. 4 Matthew’s Buddies on Long Island at over $70,000, and No. 5 Bailey’s Team in Southern New England, with $65,000.

The three top inaugural walks – New Jersey Shore at $281,000, Greater Hartford at $203,000, and Tampa at $183,000 also received awards, while the awards for the greatest percentage growth, went to Chicago, which ballooned 249 percent from $80,000 in 2005 to $275,000 in 2006.

The awards dinner was also the occasion to honor individuals who contributed to the organization and to the autism community. Long Island Walk organizers Michael Giangregorio and the Mirkin family were honored with the organization’s London Award in recognition of outstanding service, (see profiles of Giangregorio and the Mirkins), while a new award for the rookie volunteer of the year went to Janice McGreevy, who chaired the inaugural New Jersey Shore Walk (see profile). A scientific service award was bestowed on Dr. Harry Haroutunian, a leading brain researcher at Mt. Sinai School of Medicine, and chair of the Autism Tissue Program’s tissue advisory board (see profile).

In January, prior to the completion of the merger with Autism Speaks, Cure Autism Now held its annual conference in Manhattan Beach, Calif., and acknowledged a few of CAN’s outstanding achievements of 2006.

The Star Award for the Outstanding Special Event was presented to the Chicago Ride Now team of Diane Gedik, Laura Quinley, Jennifer Stary and Leo Tavolacci, who launched the Ride Now program four years ago. The event has has raised $100,000 every year, and the 110-mile motorcycle ride and after ride party are not only a blast for all who participate, but have also inspired others to bring Ride Now to their cities.

CAN’s Founder’s Award was presented each year to two people who represent the commitment and dedication of CAN’s founders – Jon Shestack and Portia Iversen. This year’s recipients were Karen Beveridge and Doug Fischer.

Karen Beveridge served as President of the Washington D.C. Chapter, which raised over $1 million dollars in 2006. In addition, she and her husband Peter held a Triathlon for the past 5 years which has raised over $750,000. Doug Fischer is the former Chapter President and Ride Now Chair of the Philadelphia Chapter. In the past two years Fischer planned more chapter meetings and events than any other chapter leader. Both Karen and Doug exemplify volunteerism in its best form.

This year, CAN’s award for the Outstanding Rookie Volunteer was presented to Karen Thompson from the Orlando Chapter. Thompson has served as both the Chapter President and Walk Chair since the inception of the Orlando chapter in 2005.

The Phoenix Committee, represented by Neil and Lynn Balter, earned the Outstanding Rookie Walk of the Year, by hosting over 2400 participants and raising over $327,000 at their first Walk event in November.

This year’s Outstanding Rookie Chapter was awarded to the Dallas/Ft. Worth Chapter. This chapter hosted their first WALK NOW event within five months from inception, activated an amazing group of leaders, and were at the epicenter of the Combating Autism Act

The Achievement Award for Outstanding Walk was once again awarded to the Los Angeles Chapter. This year the L.A. event hosted a record breaking 107 Resource Fair vendors and was the first WALK NOW event to raise over $1 million.

The final award, the Presidents Cup for Outstanding Chapter, was presented to two chapters. The Philadelphia chapter took community outreach to a new level in 2006. They hosted a record 33 events, sent out 17 chapter emails, hosted their first ever Ride Now event and raised over $800,000.

The Presidents Cup for Outstanding Chapter award was also presented to the Chicago Chapter. This was the second time that the Chicago Chapter was recognized for the strength of its contributions to Cure Autism Now.

Fundraising Expands; Science & Awareness Initiatives Grow

It was not just the walks program that benefited from the synergy between Autism Speaks and NAAR over the last year. During the conference, Roithmayr detailed the $33 million raised by the “old” Autism Speaks in 2006.

Among the gains were $12 million through major gifts under Rich Brown, national director of leadership giving. Another $5.6 million was raised through special events, including $1.1 million raised by the New York Celebrity Golf Challenge, according to Director of Special Events Tory Brucato. She honored long-time contributors Kevin and Susan Murray for their leadership in helping make that special event the year’s top-grosser.

Roithmayr also pointed out the expansion of the organization’s scientific efforts, the object of much of Autism Speaks funding. Last year, the group doubled the amount going into research, and funded a record number of grants and pilot programs. The total commitment to research is currently $20 million, Andy Shih of the Autism Speaks research team told the gathering.

Attendees also heard detailed presentations on the organization’s scientific efforts from Clara Lajonchere, CAN’s director of clinical research, from Autism Speaks’ Alycia Halladay on the Autism Tissue Program; from Jenny Longmore on autism research in Europe; and from Paul Law of the Kennedy Krieger Institute on its Autism Speaks-funded IAN project.

Added Peter Bell, who as executive vice president for programs and services will oversee the Autism Speaks scientific research program, “Science is the key to finding answers to autism. … We need to do things now, and we need to do them fast.”

Roithmayr also described how the organization’s awareness efforts have paid off big time, with what he said were “tremendous numbers” for its Ad Council public service ad campaign, as well as through a web site that he called the most visited in the autism field.

Senior Vice President Alison Singer outlined the more-than-$30 million in donated media the Ad Council campaign received in just its first six months, as well as the “huge increase” in general awareness it generated among the public. Singer said the campaign is to be extended this year with additional TV and radio spots, as well as collateral print materials targeted at doctors, educators, day-care providers and parents.

Added Roithmayr regarding awareness successes: “We are ‘it’ right now. We are moving into the public’s consciousness in a way we haven’t before.”

The gains in 2006 were not only for Autism Speaks, as was made clear through the gathering by Bell, who joined from CAN following the merger. “It was a banner year for the entire community, with incredible successes,” he said, making 2006 the best year in CAN history.

According to Bell, CAN raised nearly $11 million in 2006, a 30 percent increase over the previous year, while the number of chapters expanded to more than 21.

The CAN science program “forged new ground,” funding 40 new grants totaling about $6 million. And Bell said CAN’s Walk Now program raised $6.5 million in 17 events, drawing 40,000 participants, while its special events team raised an additional $8.2 million.

Combining Forces for New Successes

Beyond celebrating the successes of last year, central to this year’s meeting was talk of how the “new” Autism Speaks will continue to grow, given the combined forces of the two largest autism advocacy organizations following the CAN merger.

Autism Speaks Co-founder Bob Wright used remarks during the March 16 awards dinner to point to the ways in which previous joint efforts between the two groups have already paid off. He cited, as an example, the combined work to pass the landmark Combating Autism Act in 2006. But Wright said much more needed to be done, particularly at a state level. “If elected officials talk about health, if they talk about children, but they don’t talk about autism,” he said, “they should be ashamed”

Wright reserved his highest praise for the volunteers who helped raised $18 million in last year’s Autism Speaks-CAN walks, and called for an even greater contribution to the Autism Speaks revenue stream now that the walks group is one. “Volunteers are the frontline and mainline of everything we do,” he concluded.

In fact, the organization’s 70 walks this year are expected to raise over $20 million in revenue, said Susan Gloor, national walk director, while Roithmayr said major gifts is budgeting for $15.6 million. In total, the organization hopes to generate revenues of nearly $55 million in 2007, more than half-way to the long-term goal of becoming a $100-million-a-year organization.

Providing an enthusiastic spark for that effort was conference keynoter , Walk Now Phoenix Chair 2006 and founder of California Closets. In his presentation, he talked about how Autism Speaks would be driven by its local organizations, as was his former company, “It was the franchisees and their commitment level on the ground that grew that company,” he explained, adding: “Now is the time to go back, dig deep, get your friends and families involved. … Remember, enthusiasm is contagious – catch it.”


Autistic people have fought the inclusion of ABA in therapy for us since before Autism Speaks, and other non-Autistic-led autism organizations, started lobbying legislation to get it covered by insurances and Medicaid. 

ABA is a myth originally sold to parents that it would keep their Autistic child out of an institution. Today, parents are told that with early intervention therapy their child will either be less Autistic or no longer Autistic by elementary school, and can be mainstreamed in typical education classes. ABA is very expensive to pay out of pocket. Essentially, Autism Speaks has justified the big price tag up front will offset the overall burden on resources for an Autistic’s lifetime. The recommendation for this therapy is 40 hours a week for children and toddlers.

The original study that showed the success rate of ABA to be at 50% has never been replicated. In fact, the study of ABA by United States Department of Defense was denounced as a failure. Not just once, but multiple times. Simply stated: ABA doesn’t workIn study after repeated study: ABA (conversion therapy) doesn’t work. 

What more recent studies do show: Autistics who experienced ABA therapy are at high risk to develop PTSD and other lifelong trauma-related conditions. Historically, the autism organizations promoting ABA as a cure or solution have silenced Autistic advocates’ opposition. ABA is also known as gay conversion therapy.

The ‘cure’ for Autistics not born yet is the prevention of birth. 

The ‘cure’ is a choice to terminate a pregnancy based on ‘autism risk.’ The cure is abortion. This is the same ‘cure’ society has for Down Syndrome. 

This is eugenics 2021. Instead of killing Autistics and disabled children in gas chambers or ‘mercy killings’ like in Aktion T4, it’ll happen at the doctor’s office, quietly, one Autistic baby at a time. Different approaches yes, but still eugenics and the extinction of an entire minority group of people.

Fact: You can’t cure Autistics from being Autistic.

Fact: You can’t recover an Autistic from being Autistic.

Fact: You can groom an Autistic to mask and hide their traits. Somewhat. … however, this comes at the expense of the Autistic child, promotes Autistic Burnout (this should not be confused with typical burnout, Autistic Burnout can kill Autistics), and places the Autistic child at high risk for PTSD and other lifelong trauma-related conditions.

[Note: Autism is NOT a disease, but a neurodevelopmental difference and disability.]

Fact: Vaccines Do Not Cause Autism.

Explore Autistic History


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