Friday, April 25, 2014

Invest in the Future, Defeat Malaria!

April 25th is the annual commemoration of World Malaria Day. Malaria is an infectious disease that is transmitted by a bite from malaria-carrying female mosquitoes. There are mild forms of malaria, but the more severe manifestations can be deadly.

The majority of deaths as a result of malaria occur among African children, but large portions of Asia, Latin America, areas of the Middle East and parts of Europe are also affected by the tropical disease. Around the world, 3.4 billion people in 106 countries are at risk of malaria; 97 of these countries have current cases of transmission and 99 have recurring cases.

Over the last decade, the world has made major progress in the fight against malaria. Since 2000, malaria mortality rates have fallen by more than 25%, and 50 of the 99 countries with ongoing transmission are now on track to meet the 2015 World Health Assembly target of reducing incidence rates by more than 75%. A major scale-up of vector control interventions, together with increased access to diagnostic testing and quality-assured treatment, has been key to this progress.

But we are not there yet. Malaria still kills an estimated 660 000 people worldwide, mainly children under five years of age in sub-Saharan Africa. Every year, more than 200 million cases occur; most of these cases are never tested or registered. A recent plateauing of international funding has slowed down progress, and emerging drug and insecticide resistance threaten to reverse recent gains.

The World Malaria Day website has many helpful resources to learn about the malaria epidemic and how you can help spread awareness and get involved, no matter where you live:

Thursday, April 24, 2014 is LIVE!!!

It's still under construction in some areas, but the Save Ryan White Part D website is LIVE! Check it out at:

Wednesday, April 23, 2014

The Recollectors

Our final nontraditional leadership feature of the evening is an inspiring project called The Recollectors. This project is dedicated to remembering parents lost to AIDS, and to creating a digital community for their children.

Their founders, two women whom have lost their parents to AIDS-related illnesses, say that though "AIDS isn’t being talked about the way it was 20 years ago, people are still dying, and we still miss our parents."

The Recollectors, they say, is "a space where people can talk about these losses, and what they mean to our culture. To recollect is to remember...and there’s no shame in remembering."

The Recollectors' founders are also currently seeking donations in order to fulfill their dream of honoring these deceased parents in a book.

Visit them on FB:

Fred Says supports HIV+ teens

Aside from having an adorable puppy named Fred as the face of its organization, Fred Says is unique in that it is the ONLY charity devoted exclusively to supporting the health and well-being of HIV+ teenagers. There is a huge need for services for HIV+ teens as there are ~10 million young people aged 15-24 in the world living with HIV. Moreover, in the United States, where 40-45,000 new HIV diagnoses occur each year, half of these diagnoses occur in youg adults, while a quarter oocur in youth!

Fred Says sells e-cards, greetings cards, and T-shirts to raise money that allows HIV+ young people to have a better quality of life, as HIV treatment can cost around $12,000 for young people a month and almost half a million dollars in a lifetime.

Fred Says was founded by Rob Garofalo, a cancer survivor who is also HIV+. As a physician that provides medical care to young people who are HIV+, he draws from his own personal experience with HIV in addition to Fred, the dog he adopted after his HIV diagnosis, for his mission to help positive teens.

Dr. Garofalo created Fred Says to share the inspiration and hope he found from Fred with the rest of the world; now we wish to share it with you! Visit them online at:

This NOT a sob story; this is Stephen's Story

It will be difficult to post much about our next nontraditional leader without getting emotional. Stephen Sutton describes himself on his Facebook page as a "19 year old teenager with incurable cancer just trying to enjoy life as much as possible, while raising funds for charity to help others!!" But Stephen, who has been battling cancer since the age of 13 and now only has a short time left to live, is so much more than his modest description; he has truly inspired millions.

"Following the shock of an incurable cancer diagnosis Stephen came to terms with the fact his long term goals of becoming a doctor were realistically not viable anymore, so as a result he needed a change of a direction. On the 13th January 2013 he created the Facebook page Stephen’s Story.

In its original form, the page consisted of casual updates while the active teenager ticked off items from his bucketlist of 46 things he wanted to do with the time he has left. Since then, the page has developed and its sole goal is to help others- whether that be by the fundraising the page promotes, the motivational quotes and statuses that are put out, or just by the humour and general positivity he integrates within every status.

Stephen’s Story has since expanded to other forms of social media including Twitter, Tumblr and Instagram, amongst others. The much admired teenager, who writes every update himself, has now most impressively acquired over 16,000 dedicated Facebook fans and nearly 15,000 avid followers on Twitter.

Stephen’s Story has now evolved into all encompassing online platform that Stephen uses to spread as much positivity as possible from. Thus far he has inspired thousands of people across the world with his passion for life and will continue to make a genuine difference for as long as he can."

We would be honored if you would consider supporting Stephen's cause: raising funds for cancer. We welcome you to visit his Facebook page:


AUTCOM is the only autism advocacy organization dedicated to "Social Justice for All Citizens with Autism" through a shared vision and a commitment to positive approaches. This non-profit organization was founded in 1990 to protect and advance the human rights and civil rights of all persons with autism, Pervasive Developmental Disorder, and related differences of communication and behavior.

AUTCOM denounces social policies of devaluation (i.e. segregation, medicalization, and aversive conditioning) and envisions communities based on the cultivation and support rather than the control of their members. To that end, they encourage its individual members and organizational partners toward self-direction and self-empowerment.

AUTCOM is comprised of family members, people with autism/PDD, caring professionals, and other friends who are committed the right to self-determination and to hearing and heeding the voices of people with autism.

AUTCOM's activities include providing information, support, networking, advocacy, a strong voice in federal legislation and policy, a newsletter, conferences and trainings, a bookstore, a variety of unique publications, and an ongoing reappraisal of fundamental research and treatment issues in the light of what people with autism themselves find meaningful and respectful.

AUTCOM is unique among many organizations in that it has intentionally sought out leadership that is representative and/or supportive of the population it serves. From its inception AUTCOM has focused on inclusion and acceptance. They have a proud history with numerous autistic presidents and vice presidents, including nonspeaking leaders who utilized facilitated communication and AAC devices.

This newsletter from AUTCOM provides a detailed history of their inclusive leadership. Please read and be inspired!

Our favorite day of the week...

Happy Friendsday WEdnesday!

Friendsday WEdnesday is a weekly feature of Advocacy Without Borders where we celebrate all of the great things that WE (advocates around the world) are doing to improve our various communities. 

We are not employed by nor formally affiliated with any of these groups nor are we receiving any compensation for promoting their work. We consider them to be "friends" because we share a common goal of using our resources for positive change. And we hope that you will be inspired by their passion!

Our theme this week is nontraditional leadership. All of our posts will be about organizations and/or individuals whom do not fit the profile of what society often expects a leader to be like. And frankly, we're glad that they differ so strongly from the status quo!

Check in shortly for the posts !

Tuesday, April 22, 2014

Get Your "Green" on for Earth Day

Today is Earth Day; get your "green" on!

Earth Day is an annual event, celebrated on April 22, on which events are held worldwide to demonstrate support for environmental protection. Birthed out of a United Nations event in 1969, the first Earth Day was held in 1970.

Today, over one billion people in 192 countries—from Zimbabwe to Albania to Indonesia—commemorate Earth Day by engaging in activities to protect the planet.

They organize demonstrations, contact their elected officials, plant trees, clean up their communities, demand renewable energy targets, and much more. This year’s theme is "Green Cities."

Earth Day is a day of action. And action is exactly what we need. The environmental challenges of our time are too great and too urgent for us not to march, teach, and rally for a safe, stable climate and a planet where our children can survive and thrive.

You can help make that happen today; visit the Earth Day website to learn how you can help!

Monday, April 21, 2014

Eat out, save some lives!

Eat out, save some lives!

"Dining Out For Life® is an annual fundraising event involving the generous participation of volunteers, corporate sponsors and restaurants. In exchange for their financial support, restaurants are listed in a city wide marketing campaign in an effort to increase customer traffic.

In 1991, Dining Out For Life was created by an ActionAIDS volunteer in Philadelphia. Dining Out For Life is now produced in 60 cities throughout the United States and Canada.

More than 3,000 restaurants donate a portion of their proceeds from this one special day of dining to the licensed AIDS service agency in their city. More than $4 million dollars a year is raised to support the missions of 60 outstanding HIV/AIDS service organizations throughout North America. With the exception of the annual licensing fee of $1,150, all money raised in these cities stays locally.

The Dining Out For Life International Association is a 501(c)(4) nonprofit organization."

For a list of participating restaurants (there are thousands!), please visit their website:

Wednesday, April 16, 2014

Meet Morénike!

"I guess I was born to be an advocate; I hope somebody will look at me and think that they can do this, and more, too."

Meet Morénike!
Born in the US to immigrant parents, Morénike's advocacy journey began with middle and high school stints as a volunteer tutor; later, she worked with refugee children in a housing project and as a mentor in public schools during her undergraduate years. 

After graduating with a BA in International Relations, Morénike spent several years in the non-profit sector working with a variety of disenfranchised groups, including women, at-risk youth and teens, and refugee families.

In recent years, she has channeled the majority of her advocacy efforts into social justice and community health endeavors.

Morénike currently chairs the Global Community Advisory Board for the National Institutes of Health (NIH)'s Division of AIDS (DAIDS) funded AIDS Clinical Trials Group (ACTG), which is the world's oldest and largest international community HIV clinical trials program.

She has also served in several other capacities within DAIDS such as:

Chair of the local Houston Area Research Team's Cross-Network community advisory board (representing the ACTG, AIDS Malignancy Consortium [AMC], and the HIV Vaccine Trials Network [HVTN]);

ACTG Community Scientific Subcommittee member;

ACTG Underrepresented Populations Committee representative;

ACTG-HIV Prevention Trials Network (HPTN) InterScientific Committee representative;

A5282 HIV/HPV protocol team member;

IMPAACT1077 HAART-Standard "PROMISE" maternal/child HIV protocol team member;

ACTG/International Maternal Pediatric AIDS Clinical Trials Group (IMPAACT) liaison;

HPTN 064 (Test and Link to Care) protocol team community advisory group state representative;

Houston maternal/pediatric HIV CAB member (representing IMPAACT, Pediatric HIV/AIDS Cohort Studies [PHACS], Adolescent Trials Network [ATN], and Ryan White Part D).

Houston Project-Wide Ryan White Part D community advisory board member.

Morénike has also previously chaired the Houston Ryan White Planning Council in addition to chairing its Operations and the Quality Assurance Committees and various Ryan White workgroups and formerly served on the CDC-funded elimination of Mother-to-Child HIV Transmission US Working Group.

She is the founder of the former Positive Playdates, a playdate group (now merged with a local nonprofit) that connected HIV affected families and refugee youth.

Morénike completed a multi-disciplinary fellowship in neuro-developmental disabilities leadership. She has served on the Infant and Children's Mental Health Task Force, the Minority Prematurity Partnership, the Mothers' Wellness Collaborative, and the Families and Schools Together Board. She was one of the founding members of the Houston Area Partnership for Fetal Alcohol Spectrum Disorders (FASD).

Recently, Morénike founded Advocacy Without Borders, an initiative to reduce disparities through education, community advocacy and self-empowerment. The mission of Advocacy Without Borders is "to encourage ALL people to make a difference, regardless of their differences." Morénike is currently involved in a variety of leadership efforts related to Ryan White Part D advocacy.

Morénike, who is currently completing her Master's degree in Education (focusing on Developmental Delays), hopes to further her studies in a doctoral program in Social and Behavioral Public Health. She is the proud mother of six beautiful biological and adoptive children; together they comprise a proud multicultural, multinational, neurodiverse, HIV affected family.

Meet Vonetta!

"I am so passionate about helping people learn, because regardless of what others may think, everybody can learn because learning is living."

Meet Vonetta!
Not only has Vonetta Cullars has spent the entirety of her career in education, she has possessed a love for learning for as long as she can remember. In fact, by middle school she had accumulated so many books on her different topics of interest that her overflowing bookshelf nearly rivaled that of her mother, who was also an avid reader.

During her undergraduate years, Vonetta volunteered as a girls' group leader in an after-school program at a local urban public school. She enjoyed it so much that she decided to pursue employment in a school setting an educational assistant.

A short time later, Vonetta was hired at a school for children with moderate and severe disabilities. She was placed in a Deaf/hearing-impaired classroom. Though she had no experience with special needs, she was interested in being thoroughly trained and working to gain the skills and knowledge necessary to meet her students' needs.

Vonetta rapidly learned American Sign Language as well as functional use of Makaton (sign language for special needs), Coded Sign, and International Sign. After a few years of working in this school, she knew that she had found her calling, and changed her major from Business to Education.

After graduating with a Bachelor of Interdisciplinary Studies and acquiring teaching credentials, she then completed a graduate program, earning her Master of Arts in Teaching. Working in high needs schools, her students often come from "disadvantaged" backgrounds, but she believes all have the capacity to learn.

Vonetta, who has been employed for several years as a public elementary school teacher, sees learning as a platform for social change. As the parent of a child on the autism spectrum that she loves fiercely, she plans to pursue future training in autism, expanding upon her years of experience working with Deaf students and students with socioeconomic challenges.

Meet Leslie!

"Nothing has changed my perspective on life and wanting to make the world a better place more than being a mother."

Meet Leslie!
Although Leslie Raneri's passion for advocacy has been a constant throughout her life, it has greatly intensified since becoming a mother several years ago. Her sincere desire to help others motivated her to pursue an undergraduate degree in sociology, but she didn't stop there; she then enrolled in graduate school and obtained a Masters in Social Work. Later, she returned again to graduate school, this time earning a Masters in Public Health.

Leslie's first position as a social worker was in a program working directly with women, children, and adolescents with HIV/AIDS. Through this work, she developed a strong interest in advocating for people with HIV/AIDS. Future positions with the federal government (US DHHS), in social science research, community-based hospice, as well her current position in a major pediatric hospital offered additional opportunities to advocate for vulnerable populations.

In addition to her professional experience, Leslie actively serves in a number of roles as community volunteer and a leader.

A longtime member of the Texas Children's Hospital/Baylor College of Medicine IMPAACT/ PHACS/ATN/ Ryan White Part D CAB, she is also the Chair of the CAB, which is an active monthly CAB focused on maternal/pediatric HIV. Additional roles of this nature include:

IMPAACT Americas RCAB Member;


IMPAACT ICAB Americas Member;

IMPAACT ICAB (leadership) committee;

IMPAACT scientific committee;

Baylor College of Medicine CFAR representative.

Leslie is also active locally with the Ryan White program. Her involvement in this area includes:

Member of the Houston Ryan White Planning Council (which plans and assesses Ryan White Part A and B funds for people living with HIV/AIDS in the Houston eligible metropolitan area)

Former Comprehensive HIV Planning Committee member;

Current Secretary of the Planning Council;

Current Steering Committee member;

Quality Assurance committee;

Project LEAP graduate (Completion of comprehensive 17 week HIV training).

Leslie, who loves learning and collaborating with others, is a co-founder of Advocacy Without Borders, an initiative to reduce disparities through education, community advocacy and self-empowerment. The mission of Advocacy Without Borders is "to encourage ALL people to make a difference, regardless of their differences."

Recently, Leslie has been actively involved in advocacy and leadership regarding preserving Ryan White Part D services for women, children, and adolescents with HIV.

Having served in the capacity of a professional and a parent, Leslie, who is a proud single adoptive mother of two, possesses a unique perspective as an advocate. Not only have her experiences helped her to appreciate different points of view, they have emphasized the critical value of the community's voice and involvement.

Meet Denise!

"In life, you have to know where you come from, but you also have to know where you're going; I really believe that."

Meet Denise!
Denise Bent-Sanker has lived by the motto quoted above for the majority of her life. Though immensely proud of her Afro-Latina and Caribbean heritages, Denise believes firmly in the importance of acculturation as well. "You absolutely have to learn to understand the language and the culture of the place you've settled in if you are going to have any chance at success," she emphasizes. For many years, Denise put these words into practice as an instructor of English as a Second Language courses for newly arrived immigrant and refugee children and adults. However, through her work she learned that her clients' needs extended far beyond the classroom walls.

Several of her clients had difficulty navigating the complex maze of immigration law required to adjust legal statuses, obtain work permits and citizenship, seek asylum, file for spouses or other relatives remaining in their home countries, and more. Some were successful at obtaining assistance from legal clinics and/or private firms. However, scheduling issues, meager finances and/or lack of English proficiency limited access for many others, and their legal needs went unaddressed.

Seeing these needs, Denise pursued a career in immigration law advocacy. She wears multiple hats within her small non-profit firm, including certified BIA representative, paralegal, and legal research associate, securing pro-bono attorneys to aid her clients and working closely to resolve their needs. Aware of the varied needs of the populations that she works with, Denise maintains an open door policy and flexible hours, even if that means seeing a client on a Saturday afternoon because their job doesn't permit them to come on the weekdays.

Another aspect of acculturation that Denise feels strongly about is entrepreneurship. Her experience operating an in-home child care business during her children's younger years convinced her that home-based and/or small business ventures could be a viable option for immigrant and refugee groups, especially women with small children, larger families, and/or those with less educational and/or work experience. As such, she wrote and was awarded a micro enterprise grant to identify, train, and mentor women, grooming them into business owners. She is currently working on a similar project aimed at developing vocational opportunities for young males with developmental disabilities and juvenile offenders.

A proud single mother of three, Denise hopes to encourage others to pursue their dreams and advocate for themselves and others.

Advocacy Without Borders

"Encouraging ALL people to make a difference, regardless of their differences."

Founded in February 2014 as a non-profit community based organization, Advocacy Without Borders exists because ALL voices matter, and because all people deserve an opportunity to strive for growth and change.

Affirming that "stakeholders," "clients," "consumers," "patients," and/or "self-advocates" should be actively engaged in our own movements, we seek to promote social justice via collaborative partnerships (where allies are valued not above, but alongside the individuals for whom they are advocating), education, and community engagement.

We are a small, unpaid diverse team of advocates located in the US, but our interests are local, national, and global. We possess a myriad of skills and a broad range of expertise in several areas.

Our initial activities include grassroots community mobilization and awareness activities, public speaking, presentations, and qualitative research. Moreover, we provide regular information on community activities and resources to multiple audiences utilizing different methods of engagement, including technology, in our work.

Currently, Advocacy Without Borders' leadership coordinates the Save Ryan White Part D Initiative, a vast collaborative community project nationally endorsed by the AIDS Alliance for Women, Infants, Children, Youth, and Families.

Getting to knooooow us...

Welcome to a late night edition of Friendsday WEdnesday! Better late than never... 

Friendsday WEdnesday is a weekly feature of Advocacy Without Borders where we celebrate all of the great things that WE (advocates around the world) are doing to improve our various communities. 

This week we thought we'd do things a little bit differently for "Friendsday WEdnesday." As you know, we are passionate about advocacy and community-driven change, and pride ourselves on featuring the work of the many phenomenal leaders who are doing great things around the world.

But we thought today we'd take a bit of time to share a little more with you about Advocacy Without Borders as well as introduce the people behind Advocacy Without Borders--founders and contributors. We seldom share much about ourselves personally, preferring instead to focus on our cause! However, we thought getting to know us a little better might be helpful to you, and hopefully at least a little interesting too!'s "Friendsday WEdnesday" theme is "All About Us." Each post will provide some information about each member of our small but dedicated team. We hope you enjoy "meeting" us!

Wednesday, April 9, 2014

National Conference for HIV+ Women

Free registration for the largest national conference for women living with HIV/AIDS is occurring now! The conference will be May 2-4, 2014 in Dallas, Texas.

Learn more:

Wednesday off!

Apologies for taking this week off from featuring great community advocates on "Friendsday WEdnesday." To compensate, we have a really great selection lined up for you next week; be certain to tune in then! 

Sunday, April 6, 2014

#SaveRyanWhitePartD: No HIV+ Women & Children Left Behind

Please join us for a peaceful virtual Flash Blog protest this coming Thursday (April 10, 2014)! Review the event for details on how to participate; all are welcome.

Thursday, April 3, 2014

Please help these HIV+ Congolese orphans

This is a very important matter needing your attention regarding children in the Congo who need our support. They are HIV+ orphans whose adoptions are in limbo as I type!

Please read, sign, and share today!

Wednesday, April 2, 2014



The Canadian Autism Spectrum Disorders Alliance (CASDA) is a coalition of organizations (led by Autism Society Canada, Autism Canada Foundation and Geneva Centre for Autism) across Canada that are working with the federal government on behalf of families affected by Autism Spectrum Disorders.

Formed in July 2007, CASDA hopes to develop a unified voice among the Canadian ASD community. CASDA is seeking applicants to join them as they press for additional resources and services for Canadian autistics. Learn more about CASDA online:



"Accept difference. Not indifference."

The National Autistic Society is the UK's leading charity for people affected by autism.

They envision a world where all people living with autism get to lead the life they choose and hope to transform understanding of autism and make sure everyone living with autism gets the support they need.

Visit them online to learn more:



"Autism Children Foundation (ACF) s a non-profit making organization founded in 2005 by a group of parents and professionals who are determined and passionate to help autistic children in Hong Kong.

ACF organizes seminars and conferences for parents, teachers, related professionals and therapists in Hong Kong in both English and Chinese, and is collaborating with the Autism Society of America to enhance grassroots support and services for the families and the autism community in Hong Kong.

Learn more about ACF on their website:



"Autism Community of Africa (ACA), is a charitable organization that was established to help and support African families affected by autism, aiming primarily at those from less privileged backgrounds." 

ACA was founded by Bridget Kobenan, an entrepreneur and global pageant competitor who emigrated to the United States over a decade ago. Kobenan, whose educational background is finance, proudly wore the crown of Ms. Congeniality in the World Pageant in 2008 and of Ms. Côte d'Ivoire in both 2008 and 2012. Kobenan is the mother of an autistic son.

Kobenan is partnering with local community organizations and raising funds to help establish much needed autism resources in urban and rural African cities, namely in the countries of Côte d'Ivoire, Gabon, and Liberia.

Learn more by visiting them online:



Autism Spectrum Australia (Aspect) is one of Australia's leading service providers working with people with autism and other disabilities. 

Aspect delivers person-centered solutions by providing flexible, responsive and evidence-informed services. Its highly skilled professionals provide programs which emphasize the development of communication skills, social skills and independent living skills with the goal of integration into the mainstream education.

Visit Aspect's website!



Creer & Crear... where every dream comes true!

Creer & Crear means "Believe & Create." Located in Columbia, this innovative program is indeed a place where "we believe in children and create a future." 

Founded in 2007 by Johanna Crane, an MFT and a DIR/Floortime practitioner, the program offers are an integrated therapeutic and educational program which focuses on respecting and celebrating the children for who they are, offering individualized education based on developmental and socio-emotional capacities.

The program places special emphasis on the total acceptance of the child, mutual respect, and strengthening of relationship capacities. Believing that every child has the potential and the right to grow and develop in a positive way, Creer & Crear does not try to change children into different people. Instead, they respect, accept, value, and celebrate them for who they are, and we give them the tools to allow them to live in a world that is not meant for them. In this program, we develop strategies that encourage children to think independently and problem solve successfully.

If you are proficient in Spanish, please visit their site to learn more about this great organization:

Friendsday WEdnesday/World Autism Awareness Day

Happy Friendsday WEdnesday!

Friendsday WEdnesday is a weekly feature of Advocacy Without Borders where we celebrate all of the great things that WE (advocates around the world) are doing to improve our various communities. 

Today will be a little different, as Friendsday WEdnesday this week coincides with World Autism Awareness Day. Today all of the Friendsday WEdnesday posts will be feature autism organizations from around the world (with the exception of the US)!

We are not employed by nor formally affiliated with any of these groups nor are we receiving any compensation for promoting their work. We consider them to be "friends" because we share a common goal of using our resources for positive change. And we hope that you will be inspired by their passion!

When time permits, please take some time to learn a little more about the great organizations that we are featuring this week-one from every continent (except Antarctica)!