Archived | Cure Autism Now: Autism Genetic Resource Exchange (AGRE) | Circa May 10, 2006 #NotAnAutisticAlly

Does your family have two or more children diagnosed with autism, PDD or Asperger’s syndrome?

Autism Genetic Resource Exchange (AGRE)

Tell us about your family. Click here to complete the secure online Family Contact Form, or click to print the Family Contact form.

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AGRE’s Key Objectives: The Autism Genetic Resource Exchange (AGRE) was created by Cure Autism Now to advance autism research in autism spectrum disorders. Read more.

AGRE Participation: AGRE requires families to complete a series of activity steps involving three visits to the family’s home-the diagnostic assessment, the family blood draw and a diagnostic physician visit. Find out more.

Research Updates: Over the last five years, the AGRE resource has contributed to new science publications, laying the groundwork for discovering causes, treatments and a cure for autism. Read updates.

To learn more, please visit AGRE’s Frequently Asked Questions. If you still have questions, comments or concerns, feel free to contact the AGRE staff.

Browse the AGRE Family Newsletter: “Listening To You” (PDFs)

2006  |  2005  |  2004  |  2003


Family Contact Form (screenshot)

Does your family have two or more children with autism, PDD, or Aspergerís Syndrome?


If your family’s information matches this description, please complete the information form below. AGRE is only able to accept families from the United States at this time. 

ALERT: You may have heard through your local newspaper, TV, or radio station that AGRE is beginning a study for families with one or more members diagnosed on the autism spectrum. Please note, however, that this study has not yet begun. Currently, AGRE is still recruiting families with two or more members diagnosed on the autism spectrum. Although we are in the planning stages of a study for families with just one member diagnosed with autism, PDD, or Aspergerís syndrome, we have not yet begun recruiting for this study. Please keep checking back to our website for further updates.


Key Objectives

Does your family have two or more children diagnosed with autism, PDD or Asperger’s syndrome?

Tell us about your family. Click here to complete the secure online Family Contact Form, or click to print the Family Contact Form.

***

AGRE Key Objectives

  • Continue commitment to recruit families with two or more children diagnosed with autism, PDD or Asperger’s syndrome. Recruiting additional families will build the resource to its largest capacity, thereby increasing adequate statistical power for genetic analysis.
  • Increase public and private partnerships. Collaborations will position AGRE to further support new investigators, aid in rapid replication of new findings, and facilitate the immediate application of the latest tools and technologies.
  • Expand data collection to broaden the data available to researchers. AGRE hopes to include data on social responsiveness, speech and language development, and behavior patterns.
  • Create a “library of genetic findings” which will serve as a portal for autism researchers worldwide. Creating a centralized repository of the latest findings in genetics, will aid researchers worldwide interested in the field to ask the right questions and avoid duplication of efforts.

AGRE Participation

Enrollment

AGRE requests families with two or more children diagnosed with autism, PDD, or Asperger’s syndrome complete an AGRE Family Contact form.

Click here to complete the secure online Family Contact formor click to print the Family Contact form.

Confidentiality

All family data, DNA samples, and other identifying information collected by AGRE are kept confidential and coded with a confidential ID number to unique identifier to protect your family’s identity. Family contact information is not shared outside of AGRE without your permission.

Confirming the Diagnosis

To confirm that participants have been correctly diagnosed, AGRE staff visit families in their homes to conduct a parent interview, and an assessment on each affected individual.

Clinical Data Collection

AGRE collects clinical data using standardized assessments & a family interview that will aid researchers in studying autism. AGRE staff conducts home visits and telephone interviews to complete data collection.

Diagnostic Physician Visit

An AGRE pediatric neurologist (or developmental pediatrician) visits families to collect family histories and to look for traits and hereditary syndromes that may predispose individuals and families to autism. Family medical information is collected and physical exams are completed on affected and unaffected siblings.

Family Blood Collection

AGRE staff arranges for a phlebotomist, skilled in working with children with autism, to visit the family home and collect blood on all participating family members. Once completed, the blood is packaged, labeled with a confidential ID number, and shipped to the Rutgers University Cell and DNA Repository (RUCDR) in New Jersey.

The AGRE Gene Bank

Once a family’s blood samples are received at RUCDR, samples are immortalized, a laboratory process that provides an unlimited supply of cell lines and DNA to researchers. This process takes 3 to 4 months. Once immortalized the samples are stored and prepared for distribution at RUCDR.

Researcher Access

Any qualified and approved researcher whose focus is autism research is eligible to utilize the resource. The AGRE Researcher Review Committee must approve all researcher applications.

Scientific Oversight

The AGRE Steering Committee provides scientific direction for AGRE. The committee is composed of experts in genetics and neurological disorders who volunteer their time. AGRE has been approved by an Institutional Review Board (IRB) to ensure the protection of research participants.

See Also: Frequently Asked Questions about AGRE


Welcome

Welcome to the Rutgers University Cell and DNA Repository(RUCDR) website. RUCDR is the  largest university based repository in the world. We are located on the Busch Campus of Rutgers University, Piscataway, New Jersey. 

Our Mission

Rutgers University Cell and DNA Repository (RUCDR) plays a key role in research aimed at understanding the genetic causes of common, complex diseases. RUCDR activities will enable gene discovery leading to diagnoses, treatments and, eventually, cures for these diseases. RUCDR assists researchers throughout the world by providing the highest quality biomaterials, technical consultation, and logistical support.
 


THE AGRE STEERING COMMITTEE 

The Cure Autism Now Foundation AGRE Steering Committee for the AGRE project is made up of active leaders in the scientific community, representing fields which are highly relevant to autism research such as neurodevelopmental biology, neurology, neuroimaging, learning and cognition, immunology, genetics, biochemistry, and pharmacology. They have all made outstanding contributions in their own fields and we are proud to have them turning their talents towards autism.

COMMITTEE MEMBERS 

Maja Bucan, Ph.D.
Chair AGRE Steering Committee

Associate Professor of Molecular Genetics in Psychiatry 
Center for Neurobiology and Behavior,
Department of Psychiatry,
University of Pennsylvania 
http://www.uphs.upenn.edu/cnb/bucan.htm

Dan Geschwind, M.D., Ph.D., 
AGRE Chief Scientific Officer
Professor
Director of Neurogenetics Program
Department of Neurology
UCLA School of Medicine 
Reed Neurological Research Center

W. Ted Brown, M.D., Ph.D.,F.A.C.M.G.
Chairman, Department of Human Genetics 
Director, Jervis Clinic
N.Y.S. Institute for Basic Research in 
Developmental Disabilities

Rita M. Cantor, Ph.D.
Professor
Department of Human Genetics
UCLA School of Medicine

John N. Constantino, M.D.
Associate Professor
Department of Psychiatry and Pediatrics
Washington University School of Medicine

T. Conrad Gilliam, Ph.D.
Professor and Chair
Department of Human Genetics
University of Chicago

Martha Herbert, M.D., Ph.D.
Assistant Professor
Department of Neurology
Harvard Medical School

David H. Ledbetter, Ph.D.
Professor & Director of Medical Genetics,
Department of Human Genetics
Emory University

Stanley F. Nelson, M.D.
Professor
Department of Human Genetics
UCLA School of Medicine

Carole A. Samango-Sprouse, Ed. D. 
Director Neurodevelopmental Center for Young Children 
Assistant Clinical Professor
Department of Pediatrics 
George Washington University

Gerard D. Schellenberg, Ph.D.
Research Professor
Departments of Medicine, Neurology and Pharmacology
University of Washington
Associate Director for Research
Geriatric Research Education and Clinical Center
Veterans Affairs Medical Center

Matthew State, M.D., Ph.D.
Assistant Professor
Departments of Child Psychiatry and Genetics
Yale University School of Medicine

Rudolph E. Tanzi, Ph.D.
Professor of Neurology (Neuroscience),
Harvard Medical School
Director, Genetics and Aging Unit 
Massachusetts General Hospital


Q: What is AGRE?

A: The Autism Genetic Resource Exchange (AGRE) is a repository (gene bank) of genetic and clinical information that is made available to autism researchers worldwide. AGRE was created by Cure Autism Now to advance genetic research in autism spectrum disorders. AGRE collects DNA samples and clinical data from families that have two or more members diagnosed with autism or an autism spectrum disorder (known as “multiplex” families).

Q: Why does AGRE only recruit families with 2 or more affected children?

A: We focus on families where two or more children are affected with an autism spectrum disorder (ASD), because it helps us to identify the families where genes are more likely to play a crucial role. The more people in a family with an ASD, the greater the likelihood that genes are involved.

Q: Who is on the AGRE Team?

A: The AGRE team is made up of clinicians, researchers, psychologists, medical doctors, and other staff that coordinate all aspects of family participation, including scheduling family visits, conducting clinical and medical assessments, processing biomaterials and clinical data, and responding to family requests. AGRE is located in the Cure Autism Now offices in Los Angeles, California.

Q: What does my participation involve?

A: The AGRE project requires families to complete a series of activity steps involving diagnostic assessments, medical evaluations, and a family blood draw. Family home visits generally take place on three separate occasions: (1) Diagnostic evaluations will be performed with one parent and each affected child over the course of a day; (2) All family members will participate in the blood draw, which will last approximately 1-2 hours; and (3) A pediatric neurologist (or developmental pediatrician) will perform medical examinations of the children and will conduct a medical history interview with one parent (approximately 4 hours). The duration of each visit will vary from family to family.

Q: Where are the assessments and blood draws performed?

A: What makes the AGRE program unique is that all of the study steps are performed in the family home. AGRE will organize trips to various parts of the country and schedule several families in a particular area during each trip. A separate trip will be arranged for each of the three study steps, which means that families may wait up to a year or more to complete the study.

Q: Who is paying for this?

A: Cure Autism Now and the National Institute of Mental Health (NIMH) (http://www.nimh.nih.gov) both provide funding for AGRE. There is no cost to your family to participate.

Q: Will our family’s information be kept confidential?

A: Yes. All data and blood collected by AGRE are kept strictly confidential and coded with a confidential ID number to protect your family’s identity. No family contact information will be shared with anyone outside of AGRE without your permission.

Q: Should I get childcare when AGRE is visiting my home?

A: Staff visits to the family home tend to be lengthy, involving interviews with the parent and testing of the affected children. It is often helpful to have extra help so that you and your children can participate fully in the assessments. AGRE will gladly reimburse you for your childcare expenses up to $75.00 a day.

Q: What clinical information can my family expect from AGRE?

A: After a family has completed the clinical assessments and had their blood drawn, AGRE will provide a feedback letter summarizing the results of the affected children’s diagnostic evaluations.

Q: What blood test results can my family expect from AGRE?

A: Once your family’s blood samples are processed, samples from one affected child are sent to an outside laboratory for Fragile X testing and karyotyping (chromosomal analysis). Although AGRE does not routinely release the results of lab tests to families, you may request to be informed of any “positive” lab results (i.e., evidence of Fragile X syndrome or a chromosomal abnormality). AGRE staff are not allowed to discuss the results of these medical tests with you directly, but will arrange for your family physician or genetic counselor to convey these results to you.

Q: Is AGRE actually doing genetic research?

A: No. AGRE is an open resource – a repository that provides DNA samples and clinical data from multiplex families to qualified researchers.

Q: Who will use the AGRE resource and for what purpose?

A: Any qualified researcher whose focus is autism research is eligible to utilize the AGRE resource. The AGRE Researcher Review Committee must approve all researcher applications.

Q: Who provides scientific oversight of the project?

A: AGRE has a Scientific Advisory Board composed of experts in genetics and neurological disorders that provides scientific direction for AGRE. The AGRE research program has been approved by an outside Institutional Review Board to ensure the protection of all research participants.

Q: How are DNA samples made available to qualified researchers?

A: The process of immortalizing cell lines – a laboratory technique that allows white blood cells to reproduce indefinitely – provides an unlimited supply of cell lines and DNA to researchers. Once immortalized, the samples are stored and ready for distribution.

Q: Where will the DNA samples be stored?

A: AGRE ships blood samples in a customized kit to the Rutgers University Cell and DNA Repository (http://www.rucdr.org) in New Jersey. It takes approximately three to four months for the cell lines to be immortalized and prepared for distribution.

Q: Can I participate in AGRE if my family is already in another genetic study?

A: AGRE does not recruit families who participate in other collaborative genetic studies. Researchers frequently combine data sets from various sources in order to identify the genes most likely associated with autism. Because the identities of AGRE families are kept confidential, researchers will not know when a family is duplicated in the combined data set. As a result, families participating in more than one study could invalidate the results of their research. It is therefore important to let AGRE staff know if your family has participated in another genetic study.


Staff Directory: Short-List

What follows is a short-list of contacts you can use to best address your questions or comments. If you are looking for a specific staff member, you can also find a complete staff list further down this page.

To reach Cure Autism Now Foundation or AGRE staff members by phone, please dial (323) 549-0500 or our toll free number, (888) 8-AUTISM (888-828-8476). Staff member phone extensions and email addresses are listed below.

For questions or comments regarding:

Chapter Relations:
Tracey MacDonald, Ext. 728, tmacdonald@cureautismnow.org

WALK NOW Events:
Anna Heimbuch, Ext. 717, aheimbuch@cureautismnow.org or Emma Petievich, Ext. 757, epetievich@cureautismnow.org

Special Events:
Sam Levitt, Ext. 747, slevitt@cureautismnow.org

Donations or Updates to your Contact Info:
Ben Engel, Ext. 723, bengel@cureautismnow.org

Corporate Partnership and Sponsorship:
Gloria Jolley, Ext. 712, gjolley@cureautismnow.org

Research/Science Initiatives:
Therese Finazzo, Ext. 718, therese@cureautismnow.org

AGRE or our Resource/Referral Directory:
Marianne Toedtman, at 888-AUTISM-2, familyagre@agre.org

Media Inquiries:
Hillary Manning, Ext. 727, hmanning@cureautismnow.org

Website/Technical Issues:
Kevin Berk, kberk@cureautismnow.org


Staff Directory: Full List

To reach Cure Autism Now Foundation or AGRE staff members by phone, please dial (323) 549-0500 or our toll free number, (888) 8-AUTISM (888-828-8476). Staff member phone extensions and email addresses are listed below.

Kelly Marc Alston
AGRE Collaborations Manager
Ext. 721
kalston@agre.org

Senia Argumedo
Finance Coordinator
Ext. 711
sargumedo@cureautismnow.org

Connie Begay
Donations Coordinator
Ext. 739
cbegay@cureautismnow.org

Peter Bell
CEO
Ext. 716
pbell@cureautismnow.org

Kevin Berk
Manager, Interactive Communications
kberk@cureautismnow.org

Dusan Bosnjakovic
AGRE Research Associate
Ext. 729
dbosnjakovic@agre.org

Paul Brynen
Human Resources Manager
Ext. 720
pbrynen@cureautismnow.org

Brianne Cohen
AGRE Senior Clinical Research Associate
Ext. 736
bcohen@agre.org

Sophia Colamarino
Science Program Director
Ext. 726
scolamarino@cureautismnow.org

Charlotte DiStefano
AGRE Clinical Research Associate
Ext. 725
cdistefano@agre.org

Ben Engel
Manager, Donations
Ext. 723
bengel@cureautismnow.org

Joshua Fawcett
Ass. Manager, Donations
Ext. 744
jfawcett@cureautismnow.org

Angie Fedele
AGRE Clinical Operations Manager
Ext. 735
afedele@agre.org

Therese Finazzo
Grants Officer
Ext. 718
therese@cureautismnow.org

Jocelyn Furr
AGRE Data Analyst
Ext. 743
jfurr@agre.org

Chasiti Hampton
WALK NOW Resource Fair Coordinator
Ext. 755
champton@cureautismnow.org

Noelle Hannemann
Chapter Development Manager
Ext. 719
nhannemann@cureautismnow.org

Nancy Hart
AGRE Data Projects Manager
nhart@agre.org

Anna Heimbuch
WALK NOW Event Manager
Ext. 717
aheimbuch@cureautismnow.org

Lisa Hill
Special Events Manager
Ext. 738
lhill@cureautismnow.org

Gloria Jolley
Corporate Relations Director
Ext. 712
gjolley@cureautismnow.org

Nancy Jones, Ph.D.
Science Program Research Associate
Ext. 754
njones@cureautismnow.org

Vlad Kustanovich, Ph.D.
AGRE Researcher Liaison
Ext. 731
vkustan@agre.org

Clara M. Lajonchere, Ph.D.
AGRE Program Director
Ext. 715
cmlajonc@agre.org

Nelya Lepkivker
Staff Accountant
Ext. 751
nlepkivker@cureautismnow.org

Sam Levitt
Senior Special Events Manager
Ext. 747
slevitt@cureautismnow.org

Brett Long
WALK NOW Production Coordinator
Ext. 756
blong@cureautismnow.org

Tracey MacDonald
Director, Chapter Development
Ext. 728
tmacdonald@cureautismnow.org

Hillary Manning
Communications Director
Ext. 727
hmanning@cureautismnow.org

Conor McCann
AGRE Family Recruitment Specialist
Ext. 734
cmccann@agre.org

Allison McCroskey
Publications Manager
Ext. 753
amccroskey@cureautismnow.org

Dan Merriman
IT Manager
Ext. 742
dmerriman@cureautismnow.org

Janet Miller, JD, PhD
AGRE Clinical Director
Ext. 733
jmiller@agre.org

Ingrid Mondragon
Donations Coordinator
Ext. 740
imondragon@cureautismnow.org

Seromi Park
Media Relations Manager
spark@cureautismnow.org

Emma Petievich
Senior WALK NOW Manager
Ext. 757
epetievich@cureautismnow.org

Jake Pike
Senior WALK NOW Production Manager
Ext. 748
jpike@cureautismnow.org

Bret Prichard
VP of Development
Ext. 775
bprichard@cureautismnow.org

Eleni Schoenbeck
Participant Services Coordinator
eschoenbeck@cureautismnow.org

Cynthia Semrow
Chapter Development Manager
Ext. 714
csemrow@cureautismnow.org

Michelle Smith
Executive Assistant to CEO
Ext. 722
msmith@cureautismnow.org

Hau Tang
Donations Coordinator
htang@cureautismnow.org

Bessie Tarver
Receptionist
Ext. 758
btarver@cureautismnow.org

Scot Thomas
Web Developer
Ext. 724
sthomas@cureautismnow.org

Marianne Toedtman
National Resource Manager


AGRE FAMILY RECRUITMENT: 888-AUTISM-2 (888-288-4762)
familyagre@agre.org

Tiffany Torigoe
AGRE Family Recruitment Manager
Ext. 732
ttorigoe@agre.org

Norma Villalta
Major Gifts Assistant
Ext. 749
nvillalta@agre.org

Sarala R. Waller
Corporate Relations/Corporate Teams Manager
Ext. 745
swaller@cureautismnow.org

Jennifer Waltzer
Chief Financial Officer
Ext. 730
jwaltzer@cureautismnow.org

Brian Welch
WALK NOW Event Manager
Ext. 746
bwelch@cureautismnow.org

Mailing Address

We are located at:
5455 Wilshire Boulevard, Suite 2250
Los Angeles, CA 90036 – 4272
view map

Phone: (888) 8-AUTISM or (323) 549-0500
Toll Free at (888) 828-8476
Cure Autism Now – Fax: (323) 549-0547
AGRE – Fax: (323) 931-1977


AGRE Research Updates

AGRE’s primary mission is to support autism researchers in their investigations. Below is a list of scientific publications, indexed by year, citing the AGRE resource. A brief research summary, prepared by AGRE’s Researcher Liaison, Vlad Kustanovich Ph.D., is available for recent publications.

2005   |   2004  |   2003  |   2002  |   2001

How to locate research abstracts
To locate abstracts, visit the National Library of Medicine’s Pubmed database.

Use the search engine by entering the topic to find abstract about your subject.
Each abstract also provides you with a link to related articles.

AGRE Research Activities

  • Researchers can access information from over 640 families for use in their investigations
  • There are 136 AGRE approved researchers who have access to study families
  • AGRE samples were cited in more than 43 science journals since the first publication in 2001


More With AGRE


Note/Warning:

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.


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