MOHAN USA•Articles by: Arnav Gupta

Author: Arnav Gupta

Heartwarming Audio Stories About Organ Donation

Introduction:

MOHAN Foundation and Bhopuwala partnered to get you stories of hope, strength and the power to change someone’s life. Listen to these Happy Endings Podcasts led by Abhishek.

Your story ends the day you take the last breath, but what if you could pass the baton to someone else for the beginning of a new chapter?

Each life is perceived as a gift, a gift worthy of passing on. Through Organ Donation, you cannot just pass on the gift of life but also stay truly immortal. Happy Endings brings to you the stories of such courageous people who transformed their lives and didn’t give up in the face of adversity. Discover the way to numerous lives through Happy Endings.

Discover the way to numerous lives through Happy Endings.

Eight Lives Saved: Podcast on Organ Donation Awareness

About Ria Mohan:

Ria wanted to become an organ donation ambassador because she witnessed the direct detrimental consequences that those suffering from organ failure must cope with each and every day. Her aunt in India, who had to undergo dialysis three times a week, and was waiting for a kidney transplant for over 6 years now. This motivated her to take action for her and all the millions of people waiting for life-saving organs. Ria founded the TRIO Youth Ambassadorship for Organ and Tissue Donation Awareness to inform community members of the lifesaving power of registering as an organ donor. Ria believes that by sharing personal stories, she can inspire people to join the registry so she started a podcast. She will be attending an 8-year BS/MD program in college to become a transplant surgeon and hopes to continue advocating for increased awareness of organ donation.

The podcast is aimed to shed light on the life-saving power of a single organ donation. The main objective of each episode is to hear a personal story from someone affected by organ donation and witness the moving, touching effects of this enormous act of kindness. This podcast serves as a platform to forge connections and share meaningful dialogue between members of the community.

Episode-1 : Ria Mohan, Our Founding Mother

Ria speaks of her personal experiences with her aunt’s kidney failure and her commitment to raise awareness through many of her projects.

Episode-2 : Dr. Hemal, The MOHAN Foundation 

Dr. Hemal sheds light on the story of MOHAN Foundation and its effort to create a support system for deceased organ donation in India

Episode-3 : Danielle Sweeney, Seattle Children’s Hospital

Daniella is a Transplant Coordinator for liver and intestine transplant. She takes us through a day’s work and the joy of seeing a child lead a normal life after receiving a transplant.

Episode-4 : Andi, Kami, and Mental Health

The two social workers speak about their work as they support donors and recipients to go through with the surgeries.


Episode-5 : Calvin Matthew, The High Schooler

Calvin was impacted when his uncle was diagnosed with Chronic Kidney Disease. He talks about his determination to tell youngsters that the disease of diabetes and hypertension have to be taken seriously.

Episode-6 : Dr. Bose, Miss Lalitha, and Aye Zindagi

The genesis of the movie Aye Zindagi and its chief players Dr. Anirban Bose and Mrs. Lalitha. Dr Bose and Mrs Lalitha speak of their experiences in Organ Donation.

Gift of Life Institute’s (GOLI) Mini Fellowship in Organ Donation 2018

From Oct 28th 2018 to Nov 7th, 2018

MOHAN USA sponsored the Gift of Life Institute’s (GOLI) Mini Fellowship in Organ Donation from Oct 28, 2018 to Nov 7, 2018 for executives in organ donation organizations from India.

Ms Pallavi Kumar, Executive Director, MOHAN Foundation India and Ms Arati Gokhale, Convenor ZTCC (Zonal Transplant Coordination Committee) Pune completed the Gift of Life Institute’s (GOLI) Mini Fellowship in Organ Donation from October 15 to 26, 2018. One of the objectives of the agreement was facilitating the enhancement of the deceased donation and transplantation programme in India through education and training of donation and transplantation professionals in the country.

Gift of Life Donor Program manages  every facet of the donation process, coordinates the recovery of organs and tissues, and allocates the organs to  suitable recipients as per UNOS (United Network for Organ Sharing) allocation policies. All these aspects were covered by the experts during several didactic sessions.

The participants also attended a Workshop on Family Empowerment through Effective Advocacy: Averting and Overcoming Obstacles to Donation and a a Donation Champion Learning Session titled ‘Supporting Families and Sharing Best Practices’.

Pallavi and Arati also had an opportunity to attend “Life and Legacy” – an event held to honor Organ, Tissue and Cornea Donors and their families for their generous gifts. The event was held at Blackwood, New Jersey on October 21, 2018.

Educational event in association American Society of Transplantation (AST)

MOHAN USA organized an educational event in association American Society of Transplantation (AST) in Seattle on June 2, 2018

MOHAN USA, in association with American Society of Transplantation (AST), organized a special event on the 2nd of June 2018 at Seattle, Washington. The educational event, titled, ‘Strategies to Increase Awareness and Organ Donation Rates Amongst Minorities’ coincided with the American Transplant Congress, the largest gathering of over 5,000 transplant professionals from all over the world, being held in the same city.

Moderated by Dr. Anil Chandraker, Past President of the AST, the educational event saw a sold-out crowd listen to many speakers present their work on this topic. The opening remarks were delivered by Dr.Anirban Bose, President of MOHAN USA, following which Dr. Sundaram Hariharan enlightened us about the objectives of his organization Transplant Professionals of Indian Origin (TPIO). Ms. Claire Bonilla CEO of SightLife gave a superb talk, bringing into focus, the importance of local cultural sensitivities in the field of organ and tissue donation.

Next to speak was Dr. Clive Callendar, the evening’s Keynote Speaker, who delivered an inspirational tale of his life’s work, his journey in the founding of the Minority Organ Tissue Transplant Education Program MOTTEP, the hugely successful program to increase donor registration and organ donation amongst the African American community in the US. He was followed by his protégé, Dr. Keith Melancon, Professor of surgery at George Washington University, who enlightened the attendees on the outcomes of organ transplants among minorities.

Next on stage was Dr.Randeep Kashyap, surgical director of Kidney transplant at the University of Rochester, whose research focused on using primary care physician offices as effective enrolment venues for organ donor registration. This was followed by an impassioned lecture by Mr. Kevin O’Conner, president and CEO of Life Center Northwest, the most successful Organ Procurement Organization in the country on the key strategies to increase organ donation and registration.

The final presentation was by Dr. Sunil Shroff, founding trustee of MOHAN Foundation, who touched on the salient points about organ donation patterns in South Asia and the local topics and sensitivities that affect it.

A lively debate and discussion ensued at the end of the lectures about potential strategies to increase organ donation among minorities, especially South Asians, who have a significant burden of disease, but a low organ donor registration and consent rate. Dr. Callendar’s talk was very revealing as the audience learned how the rate of donations among the black population has risen over a decade due to public engagement and creating community awareness by MOTTEP at the grassroot level. Thanks to their work, the latest UNOS data shows that the rate of donation among blacks is either comparable or better than most ethnic groups in the country.

It was also evident that there is very little data in the literature about organ donation and registration rates among the South Asian population. Based on the personal experiences of the experts present at the meeting, it was felt that there is a great need to engage this community in this process and reach out to them at the grassroot level to increase their participation in both organ donation and registration. There was unanimous agreement that it was vitally important to perform more research on this topic and Dr. Callendar and Melancon offered help with their expertise to MOHAN USA to get in step with the logistics of research.

Promoting Ethical Organ Donation & Saving Lives!

2nd of June 2018 at Seattle, Washington

  • MOHAN USA, (Multi Organ Harvesting Aid Network) in association with American Society of Transplantation (AST) organized a special event on organ donation
  • The theme for the event was ‘Strategies to Increase Awareness and Organ Donation Rates Amongst Minorities
  • Dr. Clive Callendar the Keynote Speaker delivered an inspirational story on how his organisation helped to improve the organ donation rates among American Black community and bring it on par with the white community
  • MOHAN USA, in association with American Society of Transplantation (AST), organized a special event on the 2nd of June 2018 at Seattle, Washington. The educational event, titled, ‘Strategies to Increase Awareness and Organ Donation Rates Amongst Minorities’ coincided with the American Transplant Congress, the largest gathering of over 5,000 transplant professionals from all over the world, being held in the same city.

Moderated by Dr. Anil Chandraker, Past President of the AST, the educational event saw a sold out crowd listen to many speakers present their work on this topic. The opening remarks were delivered by Dr.Anirban Bose, President of MOHAN USA, following which Dr. Sundaram Hariharan enlightened us about the objectives of his organization Transplant Professionals of Indian Origin (TPIO). Ms. Claire Bonilla CEO of SightLife gave a superb talk, bringing into focus, the importance of local cultural sensitivities in the field of organ and tissue donation.

Next to speak was Dr. Clive Callendar, the evening’s Keynote Speaker, who delivered an inspirational tale of his life’s work, his journey in the founding of the Minority Organ Tissue Transplant Education Program MOTTEP, the hugely successful program to increase donor registration and organ donation amongst the African American community in the US. He was followed by his protégé, Dr. Keith Melancon, Professor of surgery at George Washington University, who enlightened the attendees on the outcomes of organ transplants among minorities.

Next on stage was Dr.Randeep Kashyap, surgical director of Kidney transplant at the University of Rochester, whose research focused on using primary care physician offices as effective enrolment venues for organ donor registration. This was followed by an impassioned lecture by Mr. Kevin O’Conner, president and CEO of Life Center Northwest, the most successful Organ Procurement Organization in the country on the key strategies to increase organ donation and registration.

The final presentation was by Dr. Sunil Shroff, founding trustee of MOHAN Foundation, who touched on the salient points about organ donation patterns in South Asia and the local topics and sensitivities that affect it.

The Impact

A lively debate and discussion ensued at the end of the lectures about potential strategies to increase organ donation among minorities, especially South Asians, who have a significant burden of disease, but a low organ donor registration and consent rate. Dr. Callendar’s talk was very revealing as the audience learned how the rate of donations among the black population has risen over a decade due to public engagement and creating community awareness by MOTTEP at the grassroot level. Thanks to their work, the latest UNOS data shows that the rate of donation among blacks is either comparable or better than most ethnic groups in the country.

It was also evident that there is very little data in the literature about organ donation and registration rates among the South Asian population. Based on the personal experiences of the experts present at the meeting, it was felt that there is a great need to engage this community in this process and reach out to them at the grassroot level to increase their participation in both organ donation and registration. There was unanimous agreement that it was vitally important to perform more research on this topic and Dr. Callendar and Melancon offered help with their expertise to MOHAN USA to get in step with the logistics of research.

Second Annual Fundraiser and Charity Gala in Seattle

June 2nd, 2018,

MOHAN USA held their second annual fundraiser and Charity Gala in Seattle on Saturday, June 2nd, 2018.

MOHAN USA’s Second Annual Fundraiser and Charity Gala was held on Saturday, June 2, 2018 at Seattle. It was organized and managed by MOHAN USA members and volunteers based in Seattle including Dr. Nidyanandh Vadivel and Yash Shroff. It was publicized via social media and emails and attended by over 150 guests from the Seattle area as well as MOHAN USA supporters from around the country and several guests from India.

The event was a gala evening of live music and entertainment performances, interspersed with inspiring talks about the work and mission of MOHAN USA and its partners including MOHAN Foundation. The audience also generously donated to the cause. This was followed by a grand buffet style dinner and music and dancing. Overall, the fundraiser and gala event was enjoyed by everyone and a grand success.

MOHAN Foundation participates in Mini Fellowship in Organ Donation at Gift of Life Institute, Philadelphia, USA 2017

23rd October 2017 to 3rd November 2017 in USA

Dr. Sumana Navin, Course Director and Ms. Sujatha Suriyamoorthi, Manager-Information Systems, MOHAN Foundation underwent Gift of Life Institute’s (GOLI) Mini Fellowship in Organ Donation from 23rd October 2017 to 3rd November 2017 in USA. This fellowship was facilitated under the auspices of the International Cooperation Agreement signed between Gift of Life Institute, Philadelphia and MOHAN Foundation in 2015. One of the objectives of the agreement was facilitating the enhancement of the deceased donation and transplantation programme in India through education and training of donation and transplantation professionals in the country. *The Mini Fellowship was sponsored through an educational grant from MOHAN, USA.

Gift of Life Donor Program, Philadelphia is  a non-profit Organ Procurement Organization (OPO) that serves  eastern Pennsylvania, southern New Jersey and Delaware.  It is the largest OPO in the country and had 540 donors in 2016 that resulted in 1,412 transplants (49 donors per million population) – the highest volume in the U.S.

The Mini Fellowship comprised didactic sessions, observational learning, workshops and special events.

Didactic Sessions: Gift of Life Donor Program manages  every facet of the donation process, coordinates the recovery of organs and tissues, and allocates the organs to  suitable recipients as per UNOS (United Network for Organ Sharing) allocation policies. All these aspects were covered by the experts during the following didactic sessions.

  • Gift of Life Donor Program – Overview
  • Brain Death Pathophysiology & Neurological assessment
  • Pulsatile Preservation
  • Donor Management and Pharmacology
  • Organ Allocation
  • Role of Transplant Coordinators in Operating Room
  • Family Support Services
  • DCD Donation
  • Serological Testing
  • Donor Physical Assessment
  • Professional Education – E-learning Services
  • Clinical Staff development
  • Hospital development
  • Data Collection
  • Public Education

Observational Learning: Multi organ procurement process (Liver, Kidneys and Lungs) – Nazareth Hospital, Philadelphia

  • Tissue retrieval process (full thickness skin, bone, tendons, fascia and ligaments) – Gift of Life  Donor Program, Philadelphia

Visit to Musculoskeletal Transplant Foundation:

The fellowship offered them the unique opportunity of visiting the Musculoskeletal Transplant Foundation (MTF) located in Jessup, Pennsylvania. Mr. Ted Bender, Director took them on a tour of the entire facility. There was so much knowledge to be gained and it was fascinating to learn about the exacting standards set to ensure the quality of tissue graft.

About MTF: MTF is a not-for-profit service organization and is the largest tissue bank in the world that is dedicated to helping people in need of tissue by providing them high quality grafts. MTF works on the following three guiding principles

  • Make more safe tissue available to patients by building strong relationships with leading organ and tissue procurement organizations.
  • Provide the highest quality tissue by having the most stringent standards.
  • Advance the science of tissue transplantation through research and development.

Visit to Einstein Medical Center:

A visit to Einstein Medical Center was organized during the fellowship. This gave them the opportunity to observe the pre transplant counselling and post transplant follow-up with kidney and liver recipients. They also had the opportunity to observe the multi-disciplinary team meeting on listing patients on the waitlist registry, as well as a QAPI (Quality Assurance and Performance Improvement) meeting.

Donation Champion Learning Session:

Dr. Sumana and Ms. Sujatha also had an opportunity to attend the ‘Donation Champion Learning Session’ – a day long workshop that addressed critical care staff on determination of brain death, best practices for referring the potential organ donors to OPOs, maximizing the clinical evaluation and donor management and supporting the families of potential organ donors.

A panel discussion on “Patient and Family Perspectives” was also a part of the workshop. The panel comprised a donor family member, a liver transplant recipient, a potential recipient awaiting kidney transplant and an expert from Family Support Services, Gift of Life Donor Program. While speaking, Mr. John Branton, liver transplant recipient shared that waiting for an organ was the most harrowing experience. He also added that among many other factors the ‘Patient Support Group’ was the one which really helped him to cope with the feeling of uncertainty and vulnerability.

Ms. Carol McCloud, a donor mother shared that donating her son’s organs helped her to come out of her grief.  Deciding to donate his organs, thus saving the lives of many was helping her to live her life after her son had passed away.   Mr. Bill Murray,  a kidney failure patient awaiting a transplant shared his experience. He said that his life was revolving only around diet, dialysis and visiting his doctor. He also added that he was waiting for that one phone call about an organ being available which might come sometime between that day and years from now, or might not come at all.

The workshop also had case study discussions on approaching donor families and donation after circulatory death.

Life and Legacy – Honoring Organ and Tissue Donors and Their Families

Dr. Sumana and Ms. Sujatha also had an opportunity to attend “Life and Legacy” – an event held to pay tribute to organ and tissue donors and to honor their families for their generous gifts. The event was held at Bear Creek Mountain Resort and Conference Center, Macungie, Pennsylvania on 29th October 2017.

During the ceremony, the families were presented with a ‘Gift of Life Donor Medal’ (a medal which was established to honor the gift that their loved ones’ had given) and ‘Wrapped in Hugs’ wrap (to make the donor families feel wrapped in gratitude and love for their generous gifts). Following that there was a photo tribute during which a photo collage of the organ and tissue donors was shown. During the photo tribute, heartwarming and soothing music was played by harpist Louis Lynch.

In addition, there was also a ‘Quilt Pinning’ section. The donor families were encouraged to bring a quilt square in memory of their loved and those quilt squares were pinned on the ‘Threads of Love’ Memorial Quilt by the donor families.

Unique Learnings:

Training and Education:

Gift of Life Institute focuses on providing innovative training and education to donation and transplant professionals worldwide. To help them attain proficiency in the field, it imparts action oriented comprehensive learning. Every course has a robust curriculum and consists of skill-based activities and discussions.  It also offers e-learning courses to meet the global training needs.

Family Support Services:

Family Support Services of Gift of Life Donor Program works extensively towards assisting the donor families to deal with their loss. Following are some of the services offered to the donor families

  • Speaking with Gift of Life  Donor Program’s counselors
  • Pennsylvania Donor Family Grief Counseling
  •  Facilitating communication between the donor family and recipients
  • Donor Remembrance Ceremony

The Family Support Services sends a ‘Donor Recognition Kit’ immediately after donation in case the donor families prefer to keep the kit during the funeral service. The kit consists of an appreciation certificate, a medal, a pin and a wristband with a message “Be an Organ Donor”.

Gift of Life Family House

During their fellowship, they had the opportunity to stay at the Gift of Life Family House, a unique initiative of Gift of Life Donor Program. The family house serves as a “home away from home” for transplant patients and their families by providing lodging and other support services at an affordable price.

“Home Cook Heroes Program” was a distinct approach of Family House to engage volunteers. With a true sense of generosity, these volunteers come and prepare meals for transplant patients and families at the Family House every day.

Mr. Howard M. Nathan, President and CEO, Gift of Life Donor Program, Ms. Theresa Daly, Director, Gift of Life Institute, the faculty and staff made the Mini Fellowship a warm and enriching experience.

* MOHAN USA, Inc. is a 501(c) (3) registered nonprofit organization that was formed to increase awareness about organ shortage and promote transparency and ethical organ transplantation in India and the rest of the world (www.mohanusa.org)

Source-Ms. Sujatha Suriyamoorthi

MOHAN USA’s First Annual Fundraiser at Mirage Banquet Hall in Edison, Nj

MOHAN USA’s Annual Fundraiser was held on September 10th, 2016 at The Mirage in Edison, New Jersey. The event was organized to raise awareness about  ethical organ donation programs in India, spread the word about the tremendous achievements of MOHAN foundation, and to build relations with the community half a world away that is sympathetic to the problems patients in India face while suffering from terminal organ failure.

The keynote speakers for the evening were Dr. Anil Chandraker, President of the American Society of Transplantation and Dr. Sunil Shroff, founding trustee of MOHAN foundation. After being introduced by the president of MOHAN USA, Dr. Anirban Bose, Dr. Anil Chandraker spoke of his own experience at the MOHAN foundation program in Chennai, India. The enthusiasm and dedication he had witnessed amongst the coordinators and grief counsellors of MOHAN foundation had left him with a lasting impression of their commitment to the cause. He congratulated MOHAN foundation on its work of facilitating deceased donor organ transplants in India, acknowledging the success of the program despite the many challenges faced both in terms of resources and logistics.

This was followed by Dr. Sunil Shroff’s speech where he highlighted the many achievements of MOHAN foundation over the years, including public awareness campaigns, training of grief counsellors, legislative efforts, opening of new branches and offices both India and abroad. Then, he invited Dr. Chandraker to inaugurate the “be the change” initiative – an online forum where those who wish to volunteer their time and expertise to altruistic efforts in India can interact with organizations and initiatives with mutually common goals.

Dr. Shroff also introduced to the crowd Mr. Luv Dhony, a young engineer who had received a life-saving liver transplant, the donor being none other than the son of Lalitha Raghuram, the country director of MOHAN foundation. His story was followed by other patient stories recounted by Mr. Mohan Mahal, one of the longest surviving heart transplant recipients, and Mr. Srini Garla the recipient of three kidney transplants. Their stories were a powerful reminder of both the tremendous work of MOHAN foundation and the nobility of this cause.

A lavish buffet was laid out for the hundred plus guests that evening. Music followed with performances by Dr. Suresh and Mrs. Banerjee, who entertained the audience with lively Bollywood numbers from the yesteryears. The floor was opened to the audience who joined with enthusiastic dancing to DJ Aatish’s music. Guests opened their hearts to the moving message of MOHAN USA and donated generously, resulting in over $ 35,000 being raised that evening. However, more importantly, the message of MOHAN USA rang out loud and clear amongst many more, with instructions to play it forward and spread the word.

The first Annual MOHAN USA launch was a grand success. It will serve as a stepping stone to many more events in the future. We hope to raise awareness, raise funds as well as put to use all our resources to benefit the patients who need an organ transplant to survive the curse of terminal organ failure.

Gift of Life Institute’s (GOLI) Mini Fellowship in Organ Donation 2019

28th October 2019 to 7th November 2019 in Philadelphia, USA

The Mini Fellowship comprised personal interactions, observational learning and one summit.
Personal interactions: Gift of Life Donor Program manages every facet of the donation process, coordinates the recovery of organs and tissues, and allocates the organs to suitable recipients as per UNOS (United Network for Organ Sharing) allocation policies. Many parts of their work were explained through interactions with the staff.

  • Gift of Life Donor Program – Overview
  • Community Relations & Public Education
  • Transplant Coordinators in Hospital Services Coordinator
  • Family Support ServicesDonation and Transplant Analysis
  • Transplant Information Centre
  • Transplant Pregnancy Registry
  • Learning through observation visits:
    Meeting with ICU nursing staff after a donation – Thomas Jefferson University Hospital and Virtua Memorial Hospital
  • Ms Yolanda Toole, a donor mother, Phildelphia
  • Dr. Edward Hamaty DO, FACCP, FACOI
  • Dr. Joseph Scalea, MD
  • Dr. Donald J. Annino, Jr., MD, DMD
  • Tissue retrieval process – Gift of Life Donor Program, Philadelphia
  • Education of nurses – in Virtua Memorial Hospital
  • Meeting with Donation Champion – a donor mother
  • Sitting in one pathology meeting -Einstein Medical Cent