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Meeting of Dr. Melnick with Dr. B.R. Lakshmi founder of the Molecular Diagnostics, Counseling, Care and Research Center, INDIA
During her visit to the United States in September 2015, Dr. B.R. Lakshmi held a meeting with Dr. Vijaya Melnick, President of IHAN. Dr. Lakshmi is the founder of India’s Molecular Diagnostics, Counseling, Care & Research Centre. [MDCRC] Headquartered in Coimbatore a large city in India’s Tamilnadu state, the center is a not-for-profit charitable organization dedicated to identifying and alleviating the rare disorders of Duchenne Muscular Dystrophy (DMD) and Spinal Muscular Atrophy (SMA). These two lethal genetic disorders affect children because the conditions are expressed in childhood and it is rare for affected individuals to survive beyond age 25. There is no known cure.
DMD is usually apparent by age 6 and results in severe motor disability by age 10 or 12. Life expectancy is less than 25 years. Due to the genetic characteristics of the disease, the vast majority of those affected are boys, but the disease has occurred in girls rarely. [see NIH discussion for more information.]
There are several types of SMA including a type that can only be transmitted to girls. [Because it is linked to the X chromosome.] Several types are transmitted are autosomal recessive, that is to say, both parents must carry the defective gene. The expression and prognosis is similar to DMD but the condition is more rare. [ A fuller explanation can be found here. ]
Dr. Lakshmi and Dr. Melnick
As these disorders progress, children are not able to enjoy active play and run like other kids. In most cases in India, schools do not accommodate their disabilities and they cannot attend school. Though mentally agile, they are confined to wheel chairs by age 10 or 12.
The MDCRC is a recognized referral center for Molecular Diagnosis for DMD and SMA and has been recognized by the Health and Family Welfare Department of Tamilnadu state. Dr. Lakshmi explained her organization’s work. MDCRC was founded in 2006.
Dr. Melnick and Dr. Lakshmi discussed the epidemiological, ethical and clinical implications of understanding and managing such genetic disorders.
DMD is an X-linked recessive disorder, affecting male children, while SMA is an autosomal-recessive disorder. Consanguineous marriages, in which both parents have a common ancestor, increase the chance that a child will be born with these disorders. Thus, public health efforts are critical to addressing these tragic cases and reducing or eliminating the problem.
The center concentrates its efforts on identifying families that have a high probability of producing children with this disorder. Molecular and genetic diagnosis plays a crucial role in identifying, preventing and setting the base for future therapeutic strategies to address these disorders. By mid-2015, Dr. Lakshmi and her colleagues identified close to 3000 children affected with DMD, and 600 of SMA. Studies reported by their staff suggest that in some areas of India the risk of these disorders is 2.4 times higher than reported in other parts of the world.
MDCRC goes beyond diagnosis to also provide comprehensive services to the families with children affected with DMD and SMA. Their services include multi-disciplinary clinical care offered free of cost to patients. This includes Pediatrics, Neurology, Orthopedics, Pulmonology and Cardiology. The center provides weekends and evenings to give the kids and families some nice memorable moments.
Dr. Lakshmi said that “MDCRC is the only centre in India offering such comprehensive services for these disorders.”
Dr. Melnick discussed IHAN’s interest in MDCRC’s efforts and explored possible future collaboration.
Report on the
HIGH LEVEL FORUM ON THE CULTURE 0F PEACE
by Eliana Horta, RN, MS, MPH
On September 9, 2015 an all-day conference on the Culture of Peace was held in the Trusteeship Council Chamber of the United Nations Headquarters in New York. We, the torch carriers of the International Health Awareness Network, have long been aware of peace as an essential component of high-level health. The presence of peace contributes to individual and collective health, productivity and prosperity in social networks ranging in size from dyad to home, work place, and community to the international arena. Many struggle to define the concept of peace with ever more precision and to identify the essential processes that foster peace.
An important milestone in the involvement of civil society (a term as used at the UN – all of us in NGOs and the general public) in naming the culture of peace occurred in September 1999. The General Assembly adopted by consensus the United Nations Declaration and Programme of Action on a Culture of Peace. There were precedents for such a Declaration in the Charter of the United Nations, as well as the Constitution of UNESCO (UN Educational, Scientific and Cultural Organization) and the Universal Declaration of Human Rights. Nevertheless, the move toward adoption of the Declaration on a Culture of Peace required the thought and commitment of advocates led by Bangladeshi diplomat and former Under-Secretary-General of the UN, Ambassador Anwarul Chowdhury. This year, Ambassador Chowdhury moderated the afternoon panel of the High Level Forum.
We hope you will be inspired to read the Declaration which can be found, in seven languages, at: www.un.org/Docs/asp/ws.asp?M=A/Res/53/243 . Not content to rest on his laurels after passage of the important Declaration, Ambassador Chowdhury’s initiative as President of the Security Council resulted in the adoption of the UN Security Council Resolution 1325, an historic document that heralded the role of women in peace and security. For the first time, the Security Council addressed the disproportionate and unique impact of armed conflict on women and moved to protect the rights of women and children in conflict and post-conflict areas. Equally importantly, Resolution 1325 acknowledged the under-used and under-valued contribution women make to prevention and resolution of conflict and to peace building.
As the High Level Forum began, His Excellency Mr. Sam Kutesa, President of the General Assembly opened the morning session. After his welcoming remarks, he introduced Secretary-General of the United Nations, His Excellency Mr. Ban Ki-Moon. The Secretary-General voiced his support for the Culture of Peace and noted the continued and increasing recognition of Culture of Peace at the UN. Various luminaries of the Culture of Peace, followed with presentations sharing their perspectives on the culture of peace, gleaned from experiences lived around the world in myriad positions of government and civil society.
From the many learned perspectives brought to bear by the distinguished speakers at the Forum, space constraints limit this account to the Keynote Address by Mr. Arun Gandhi, grandson of the apostle of non-violence and Indian independence leader, Mahatma Gandhi. Through remembrances and lessons learned from his grand- father, Mr. Gandhi noted that the culture of peace is much more than an abstraction. Mahatma Gandhi believed that Peace is not merely the absence of war, killing and violence. Rather, peace relies on the active involvement of people. In that sense, his non-violent techniques were not passive, but rather the height of active engagement. He taught that the waste of natural resources is violence against nature. Depriving people of resources is violence against humanity. He urged us to take personal responsibility for the parsimonious use of resources so that all people can achieve real prosperity.
Mr. Arun Gandhi illustrated, throughout his presentation, that the heart of peace not only eschews physical violence but the invasive permissiveness of “passive violence” as well. There is, in passive violence, a persistent intent to control others through fear, or acts of injustice that exacerbate anger and violence. It is not only in avoiding active violence, he said, that we are not violent. We may commit passive violence without self-awareness. In his words, we must become aware that passive violence acts are “violence against nature or humanity”. Mr. Gandhi spoke about “personal transformation” in which one becomes aware of passive violence and our personal responsibility for such acts.
For Mr. Gandhi “culture of peace” is not achieved only through institutions, government and laws. “Laws cannot make us respect, accept, understand or be considerate to others.” The Culture of Peace, he adds, requires personal transformation. It requires each of us to live our lives without hurting others emotionally, socially or culturally. “The worst violence is ignoring poverty”, he declares. “Peace is from the bottom up. We must become the change we want to see in the world.”
Mahatma Gandhi, his grandfather believed in “a global vision… our future, our destiny is interconnected one to the other to create stability, prosperity and security for all. We, all of us, hold the accountability for consciousness of our purpose in life, the interconnection of every human being for the wellbeing, happiness and survival of humanity.”
Panel discussion and individual speakers throughout the day echoed the perspectives of the UN Declaration of Action on a Culture of Peace and the Security Council Resolution 1325 as giant steps forward. Implicit in that perspective is the moral imperative that we all take up the work necessary to move together, step by step on the walk toward peace. Only then will we “…transition from force to reason, from conflict and violence to dialogue and peace.”
Listening to the High Level Forum on the Culture of Peace was a lift from the dispiriting barrage of news of forced migration and suffering wrought by conflict, poverty and social injustice. The sharp contrast between “the possible” and “the present” impels us toward the work of building together a culture of peace.
REPORT ON BIENNALE ARTE – VENICE
All the World’s Future
By: Sorosh Roshan,MD, MPH
Founder President of IHAN
The Biennale Arte in Venice titled “ All the World’s Futures” explores via architecture, art, cinema, dance, music and theatre many vital issues. Eighty nine countries are participating in the show that runs from May 9th to November 22nd 2015. The exhibits feature such areas of concern as sustainable development, gender equality in the workplace, climate change and its relation to poverty and marginalization of women that are directly related to IHANs mission. The current exhibitions, as well as the history of the Venetian event make it an important occasion to reach a substantial and influential public. This report is based on my visit to the Biennale and focuses on areas of direct interest to IHAN members.
The 56th International Art Exhibition curated by Okwui Enwezor expands from the central Pavillon at the Giardini to the Arsenale and to many areas in other buildings in the city. What follows features a few examples that are intended to wet the appetite of our members. [More detailed information about the exhibits can be seen on their website http://www.labiennale.org/en/art/exhibition/ .] Even if you can’t make it to Venice in person, you can use this website to be a virtual participant.
Here I report on key exhibits that feature IHAN’s priorities and relate to the countries where we have been working.
My first visit was to the exhibition by UNESCO. Themes were: Behind Food Sustainability; Cultural and Natural Diversity; and Feeding Our Future.
The UNESCO exhibit focused on three themes:
- Fostering Participation,
- Protective Diversity; Balancing the Food Economy; and
- Looking After The Land.
IHAN is committed to the Culture of Peace, Education and cultural heritage advancement, values that closely reflect UNESCO’s program.
The Australian Pavilion was replete with information about their history, tribes,culture and life. It’s major theme is “A cultural home for Australia on the international stage”.
For several years IHAN has collaborated with Dr. Gabrielle Casper, a professor of Obstetrics and Gynecology at a prominent university professor in Sydney. She has been a featured speaker in IHAN sponsored parallel events during the Commission on the Status of Women (CSW) events at the United Nations for the last few years. Dr. Casper has also facilitated the participation of a group of medical students from her university to make brief presentations, at our sponsored events at CSW, on their studies of varied issues related to the health care of women and girls. Dr. Casper’s has advocated the donation of state-of-the- art portable ultra sound machines developed for low resource settings. The contribution of these machines for the maternal health project of IHAN in Tanzania in 2014 and 2015 has been greatly appreciated by both our colleague Madam Zahra Nuru and the Tanzanian Ambassador to the UN who has facilitated delivery of the machines to an area designated by Madam Nuru.
The South African Pavilion celebrates the peaceful reconciliation and historical end of Apartheid in their country . Desmond Tutu’s enlightening message of forgiveness and peaceful solutions to violence and injustice was heart warming. As a representative of IHAN, Dr. Suzanne Stutman, first Vice President of IHAN and I have had the pleasure and honor of meeting Desmond Tutu on behalf of IHAN’s work.
South Korea, submitted a very informative video presentation on discrimination against women in the work place and labor laws. The achievement of South Korean women to effect change is very inspiring. Honorable Yun Sook Lee [a member of our advisory board] has been indefatigable leader of women’s movement in South Korea and globally. We are honored to have worked with outstanding women of South Korea.
Two exhibitions from China are interesting.
One is called Highway to Hell, conceptualized and developed by Kiang Heing.
The exhibition depicted, with vibrant and artistic works, the devastating effects of a rapid pace of life characterized by materialistic and superficial goals and often self-referential ways of life.
The second Exhibition from China is located on the Island of St.Giorgo. Curated by Liu Xiaodong it describes the Hotan Project on the issue of ethnic workers in the jade industry and other work related issues.
Liu used a unique approach setting up a temporary studio and included sketches, diaries, oil painting and photography. A camera team was also present to document the entire progress with a film.
In order to complete the project, Hou Hanru, chief curator of the project launched a complex series of programs parallel to the painting. It includes on-site research, historical research, tournament exhibitions, film viewing, seminars and on-line publications.
Art by Jaume Plensa, Barcelona Spain
Also on the island of St. Giorgo, among the many and varied exhibits there, was a thought provoking presentation by a renown artist from Barcelona, Jaume Plensa.
The exhibits on the island are enhanced by a musical treat: wonderful musicians and singers. For example, during my visit, they featured a Vivaldi concert at the Vivaldi Church and an Opera in Concert with the arias of Verdi and Puccini. Other performances continue throughout the life of the exhibition.
One exhibit features A monumental work by Magdalena Abakanowicz, born in Poland in1930. She is considered one of the most prominent artists of the 20th and 21st centuries. The painting,Titled Crowd and Individual, was a stellar attraction in the exhibit.
The Curator of the exhibit [Luca Massimo Barero] wrote: ” The Crowd of 110 figures, faces a counterpart an animal-like being, also referred to as the Mutant. The figures have an extremely haptic, lively surface, resembling tree barks but are, in fact, empty shells. … I think that the impact of Magdalena Abakanowicz ‘s work arises from the way she conveys, through a powerful sense of a crowd or group, a human condition with an existential meaning in which often faceless people are bewildered bystanders, who find or lose themselves again.”
A Japanese artist honored the art of the traditional tea ceremony by means of a glass tea house in the middle of water in a shallow pool constructed with blue tiles from Japan.
ISLAND of Giudecca
On the last day in Venice, my hostess Paula invited me to visit the vineyard in the Island of Giudecca. She works there as a volunteer helping to preserve the vineyard and the surrounding garden. It was a wonderful experience to be in nature with the glories of grapes, zucchini flowers and an herb garden.
HOW YOU CAN PARTICIPATE
The Biennale continues through November 22 with both changing and continuing themes, exhibitions and events. In August for example, there is a program (among many) that asks the question: How is knowledge formed within one person and transmitted through time, space, and social relationships? Specific topics to be considered range from artist-initiated educational institutions, to the potential of curriculum for community-wide learning, and the future of education in Afghanistan.
This report greatly benefited from the contributions provided by Dr. Beatrice Goodwin, Chair of the NGO Health Committee and a Board member of the International Health Awareness Network (IHAN), and Eliana Horta, IHAN representative to the UN. Board members from South Africa, Dr. Jaco Hoffman and Amanda Diener, Esq. first alerted me to the importance of the exhibit.