Adelphi Presents: “I Don’t Want To Be a Guinea Pig – Understanding the Benefits of Clinical Trials”

Originally Published on the Long Island Herald

News from the Adelphi NY Statewide Breast Cancer Hotline & Support Program

“I Don’t Want To Be a Guinea Pig: Understanding Clinical Trials” is the topic of a free forum to be held on Tuesday May 24, from 6 to 8 pm, at Adelphi University in Garden City. On the panel are George Raptis, MD, MBA, acting executive director, Northwell Health Cancer Institute; Jan Stieb, RN. administrative director, Clinical Research, Northwell Health Cancer Institute; and Barbara, a current clinical trials patient.

Clinical trials are research studies that explore whether a medical strategy, treatment, or device is safe and effective for humans. These studies also may show which medical approaches work best for certain illnesses or groups of people.

“’I don’t want to be a guinea pig’ is a frequent response from patients offered cancer clinical trials,” says Dr. Raptis, “But without clinical trials, today’s patients would be getting yesterday’s treatments.  And with the tremendous advances we are seeing in cancer research together we are responsible for delivering a still brighter future for our families and communities. Unfortunately, there is a lot of misunderstanding about what clinical trials are, and what it means to participate in one.”  Dr. Raptis hopes that the panel discussion will shed light on the clinical trials process, debunking myths and perceptions.

The forum is a collaboration of the Adelphi NY Statewide Breast Cancer Program and Northwell Health Cancer Institute. It will be held at the Alumni House at Adelphi University (154 Cambridge Avenue, Garden City). Reservations are required.

To register call 516-877-4325 or E-mail breastcancerhotline@adelphi.edu or register online at: breast-cancer.adelphi.edu/we-can-help/forums/.

 When registering specify that you will be attending the “I Don’t Want to be a Guinea Pig: Understanding the Benefits of Clinical Trials” forum.

The forum will live streamed on YouTube: www.youtube.com/AUBreastCancer

2... 4... 6... 8 How Do We Appreciate?

Originally Published at the Huntington Post

When the clock strikes Midnight on April 30th what happens to Autism Awareness?

Autism Awareness and Autism Acceptance 

April is Autism Awareness Month, begun over 25 years ago by the Autism Society of America, a leading grassroots autism organization, existing to improve the lives of all affected by autism. www.autism-society.org

In the late 90’s Portia Iverson and John Shestack started Cure Autism Now and made a pledge to use their talents and influence in the entertainment industry to make autism a household word. They did. Cure Autism Now later merged into Autism Speaks www.autismspeaks.org in 2005, which is now one of the largest autism organizations in the world, focusing on science and advocacy.

In 2008, Jacqueline Aidenbaum and Juan Carlos Brandt, high ranking employees at the United Nations and parents of a three-year-old son with autism, spearheaded World Autism Awareness Day. With the sponsorship of the State of Qatar, and the support from Bob and Suzanne Wright founders of Autism Speaks , April 2nd was approved by the General Assembly and is now internationally recognized, encouraging Member States of the United Nations to take measures to raise awareness about children and adults with autism throughout the world. .https://www.autismspeaks.org/news/news-item/%5Btitle-raw%5D-244.

Now hundreds of cities across the globe light their landmarks “Up Blue” on April 2nd to show solidarity of autism awareness.

The journey continued:

In 2011, Paula C. Durbin Westby began Autism Acceptance Month http://www.autismacceptancemonth.com/about/, which has expanded to become “a way of viewing Autism in a positive and accepting way.”

This year, even Apple is getting into the act with a beautiful video of Dillan Barmache, who uses his iPad to communicate his deep thoughts and brilliance. http://themighty.com/2016/04/apple-short-film-dillans-voice-shares-how-autistic-teen-dillan-barmache-uses-technology-to-speak/

Awareness and Acceptance has led to better early identification and intervention, research, funding, and more accommodations for people with autism and their families.

April has been successful in bringing autism ‘out of the closet.’

But what happens after 11:59p.m. April 30th and the clock strikes twelve? What happens when the Sydney Opera House is no longer lit up blue; when bright blue t-shirts have faded; when the media has become “autismed out” and the new autism books are no longer number 1 on Amazon.

What happens May 1st?

Autism Appreciation 

As my friend, Dr. Stephen Shore, an adult with autism, international speaker, and Professor at Adelphi University, enlightened me years ago, we need to move away from awareness and just accepting autism towards: Appreciation.

We need to appreciate individuals on the autism spectrum every day, throughout the year. How do we open our eyes to and support the gifts, talents, and abilities of people with autism?

We all have strengths and weaknesses

In my book, Seven Keys to Unlock Autism, http://www.amazon.com/Seven-Keys-Unlock-Autism-Classroom/dp/0470644095, I suggest that we must first accept our own challenges and acknowledge that we all have ‘special needs’ depending on what environment we are in. We all require different supports in different environments. For me, technology sends me into a funk of confusion and paralysis - I need tremendous support; but when I converse with others on the topics of creativity, philosophy and spirituality, I am in a state of flow and joy. When my son, with severe autism, is in a crowded classroom under fluorescent lighting, he may run around the room hands over his ears, too distracted and dys-regulated to focus. When in the Santa Monica Mountains, he can lead his classmates, effortlessly, on every trail. An outsider watching my son in his classroom would deem him low functioning. In the outdoors, he would be called the leader.

I beg that we all stop using the terms ‘high functioning; low functioning” - insisting as Dr. Barry Prizant, author of Uniquely Human, states, “We all have areas of strengths and weaknesses that create our individual profiles. Children with autism just have more pronounced strengths and weaknesses.” http://barryprizant.com/uniquely-human

Appreciation means acknowledging and celebrating the strengths and abilities we are all given. My son now works on an organic garden; I teach and coach others in my creative methodologies. If people only looked at my son or I as our deficits, we would feel anxious, alone, disconnected. When appreciated for our assets and gifts, we become active contributors to our society.

By focusing on the strengths of every individual, we have an opportunity to bring out and appreciate the gifts in all. My work with The Miracle Project www.themiracleproject.org has led me to witness transformations when my students are surrounded by love, acceptance and appreciation. A non-verbal student types lyrics to our songs. A student, once too frightened to even walk into a room of her peers, now performs Opera in front of thousands. Families develop deep friendships as they see their children blossom and connect to others.

We need to listen to and appreciate the messages that those with autism bring. The world really is too loud, too frenetic, disjointed, overwhelming. People with autism recoil from this while “Normies” try to cope and make sense of a ‘toxic’ world.

We need to embrace and appreciate the many gifts, talents of those on the spectrum and to help guide them to meaningful employment and lives. We also need to appreciate the challenges that they and their families experience in a society of disapproving looks and judgments.

To answer this call, my friend Jess Block Nerren, a media specialist and parent to a child with autism who is in remission from cancer, and I have joined forces to create a video which goes deeper to appreciate those on the spectrum. This new video is a quick-hitting segment showing the positive impacts that people with autism have had on those with and with out autism.

https://www.facebook.com/Autism-Appreciation-1756915301209242/?fref=ts

We hope to receive videos from others and get this movement going. Asking....

How do you appreciate?

In Joy and Gratitude,
Elaine Hall

Adelphi Manhattan Center's New Part-time B.S. in Nursing Program

 Adelphi University College of Nursing and Public Health has announced a new part-time Bachelor of Science in Nursing program -- offered evenings, only at Adelphi’s Manhattan Center. 

Due to start Fall 2016, this new program makes it possible for students to balance work, family and college. 

The convenience of evening classes makes Adelphi Manhattan the ideal choice for part-time students who are prepared to pursue a bachelor’s degree in Nursing. 

This part-time Bachelor of Science program at Adelphi's Manhattan Center combines the study of nursing theory, research, clinical practice and community service. Dedicated to the highest professional standards, this program instills an appreciation for cultural diversity and an understanding of the various applications of healthcare in a wide range of settings. 

This program emphasizes the nurse’s role in health promotion, long-term care, research, advocacy, teaching and leadership management. The basic nursing curriculum consists of a planned progression of courses that build upon previous knowledge and develop skills at increasing levels of competence. The lower-division nursing and the science courses are prerequisite to the junior-level nursing courses. Throughout the curriculum, concepts relating to the promotion of health, care during illness, and long-term care are developed. Also emphasized are the nurse’s roles in research, advocacy, teaching, change and management.

The part-time undergraduate nursing program enables students who have completed the prerequisite courses to earn their B.S. in Nursing in 8 terms (3 falls, 3 springs, and 2 summers) of part-time study.

For more details about the program, contact Irene Auteri Ferguson, director of nursing at Manhattan Center, at 212.965.8340, ext. 8366 or ferguson@adelphi.edu.

Celebrating National Public Health Week at Adelphi University

Adelphi University will recognize National Public Health Week, April 4-10, 2016, with numerous events to promote awareness of a variety of health issues and celebrate those individuals working to improve and build healthy communities.

Center for Health Innovation is proud to host its inaugural TEDxAdelphiUniversity featuring presenters who will collectively suggest ways we can improve ourselves, our communities, and our society. On Tuesday, April 5, from 9:00 a.m. to 2:30 p.m., a stellar line-up of nine speakers will deliver TEDx Talks on topics of vital importance around the theme of “What If…” Presenters include Francine Conway, Ph.D. ’99, Jennifer Krol ’17, and Adelphi University President Christine M. Riordan, Ph.D., among others. To get more information, follow at https://www.facebook.com/TEDxAdelphiU/ and https://twitter.com/TEDxAdelphiU. We will be live tweeting and streaming from the event.

 The Adelphi community will gather on Wednesday, April 6, from 11:00 a.m. to 2:00 p.m. for a fun day of learning and interactive activities in the Center for Recreation and Sports for the largest AUHealth Fair to date. More than 70 vendors will participate and more than 15 student research poster presentations will highlight the day. In addition, the Rollin Colon will be available to tour and a grand prize raffle will be held with giveaways including an iPad Mini and an Apple Watch.

Students, faculty, health care professionals, community members and anyone interested in the American health care crisis are welcome to attend “Place Matters—Is Inequality Making Us Sick?” on Thursday, April 7, in the Campbell Lounge. The free event hosted by the College of Nursing and Public Health will feature a video documentary about neighborhood and health and a panel discussion including Dr. Tonya Samuel, Dr. Todd Vanidestine, and Dr. Pilar Martin, as moderator. Light refreshments will also be served.

To close out the week, nearly 800 will walk and camp overnight starting Friday, April 8 for Adelphi’s Relay for Life 2016, a fundraiser sponsored by the Center for Student Involvement and Campus Recreation to support the American Cancer Society. The objective of Relay for Life is to raise money for cancer research and cancer patients, as well as spread cancer awareness, celebrate the lives of survivors, remember those who lost their lives to cancer, and unite a community in the fight against cancer. Join teams of students camp out in the Center for Recreation and Sports from 6:00 p.m. on Friday until 6:00 a.m. on Saturday. Food, games and activities will provide entertainment and build community. The Adelphi community is encouraged to sign up and donate.