NGO in India Promotes World Retinoblastoma Awareness Week

Retinoblastoma (RB) is the most common eye cancer in children, affecting approximately 8,000 of them each year. In developed countries like the United States, the survival rate reaches beyond an astounding 96%, with early diagnosis and treatment being key to saving a patient’s life and sight. However, this incidence rate is higher in developing countries, where most of the children succumb to metastatic retinoblastoma. In areas where children and families have no means of travel to treatment centers far away from them, these afflicted children often endure their disease untreated until there is very little hope for them left. Because no child or family should have to suffer these losses, especially due to the simple inability to reach proper care, The Eye Cancer Foundation has launched the 2020 Campaign, a campaign dedicated to training ophthalmic oncologists to serve in underprivileged countries.

One such underprivileged area is India, a country populated by over 1.32 billion people and counting, where 1,500 of the global 8,000 retinoblastoma cases are diagnosed every year. However, the reality persists that many cases of retinoblastoma go undetected or unreported in India, and awareness for the disease is abysmally low in rural areas. Motivated by India’s need to increase awareness and treatment for this disease, The Eye Cancer Foundation has sponsored fellowships for three doctors from India to train with Dr. Paul T. Finger at The New York Eye Cancer Center over the last year alone — Dr. Sonal S. Chaugule, Dr. Abhilasha Maheshwari, and Dr. Puneet Jain.

After the successful completion of her NYECC-ECF fellowship in Summer 2017, Dr. Chaugule returned to her native Maharashtra, India. She currently employs her expertise in retinoblastoma care by consulting at HV Desai Eye Hospital, a critical center for eye cancer patients in Pune, India. Her continued efforts to raise awareness in this vastly unrecognized disease have led to her medical advice being featured across Indian news media. According to Dr. Chaugule in The Indian Express, “Awareness about retinoblastoma is low and early detection is crucial to give the best chance of saving the child’s life, eye, and vision. Early detection and proper treatment will ensure 95% of the children diagnosed with RB are saved from death, 90% have their eye intact and 85% have their vision protected.

Unfortunately, in India, a child is taken to an eye specialist only when there is any notable problem, which makes treatment of RB at a later stage much harder,” she said.

Dr. Chaugule suggests that systemized screening of the eye for any abnormality in infants and toddlers should be made mandatory. Additionally, it is crucial that all doctors and healthcare professionals, whether they be eye cancer specialists or not, ought to be deeply sensitized to this disease’s magnitude.

In response to India’s growing need for retinoblastoma care, The Iksha Foundation, a non-governmental organization based in Benglauru, has accelerated their programs to raise awareness for the disease so that children may be diagnosed early enough to save their livees. Founder and trustee at the Iksha Foundation, Thanmaya Bekkalale, says, “We only know the reported cases of retinoblastoma — there are numerous cases that go unreported. The need of the hour is to spread individual and societal awareness about retinoblastoma and promote early detection as it is documented that every day, four children are born with eye cancer in India, and one of them is facing death as a result of diagnosis at an advanced stage, or not diagnosed at all.”

To raise awareness, May 13th through 19th were observed as World Retinoblastoma Awareness Week. The Iksha Foundation will hold awareness programs, ensuring that their various stakeholders will understand that early diagnosis is crucial to saving the lives of children throughout India.

Read the article published in The Indian Express by Dr. Chaugule and her colleagues at HV Desai Eye Hospital here.

To stay up-to-date on the latest news in eye cancer, please keep our website, eyecancer.com, in your bookmarks.


From India to the Big Apple

At the close of 2017, The Eye Cancer Foundation promised its supporters to continue the momentum of the tremendous strides made throughout the year, and indeed it has with yet another Eye Cancer Foundation Ophthalmic Oncology Fellowship thus completed. Meet the ECF’s latest Fellowship alumnus: Abhilasha.

Abhilasha Maheshwari, MBBS, hails from the bustling northern city of Chandigarh, India, and took a special interest in the treatment of eye cancers early on in her career as a medical student. It was from there that she further ventured into the speciality by training under the world-renowned eye cancer specialist and member of the Scientific Advisory Board for the Eye Cancer Foundation, Dr. Santosh Hanovar at Centre For Sight in Hyderabad, India. For many South Asians, Centre For Sight is vital, due to the unfortunately low amount of treatment centers readily accessible to eye cancer patients within the geographic area. Dr. Hanovar, always eager to progress the eye cancer speciality, had put forth Dr. Maheshwari as a candidate to be further trained in ophthalmic oncology by Dr. Paul T. Finger at the New York Eye Cancer Center and New York Eye and Ear Infirmary. She was accepted for the program, and arrived for her six month fellowship in August 2017.

Apart from embracing the colorful experience of living in an entirely new city, Dr. Maheshwari has aided in a number of Dr. Finger’s groundbreaking projects during her time as an Eye Cancer Foundation Fellow. January 20, 2018 saw the publication of a paper worked on by Dr. Finger and Dr. Maheshwari, which presents a 12-year study of 52 patients with uvueal melanoma treated with low energy photon, slotted eye plaque Palladium-103 radiation therapy. The paper was successfully published in the American Journal of Ophthalmology and presented orally at the November 2017 American Association of Ophthalmic Oncologists and Pathologists (AAOOP) Annual Meeting held in New Orleans, Louisiana.

Additionally, Dr. Maheshwari became the first ECF-ICO Fellow to participate in the DRO Initiative, a program used by the NYECC to report patient outcomes on the web in a patient-accessible format. Her work included anonymously recording these patients into the program for their disease, treatment, visual acuity, tumor stage and height, and more. She has since handed her instructional work to the next NYECC Fellow, and the DRO Initiative continues with outstanding success. To learn more about DRO, click here.

Where is she now? At the end of her fellowship, Dr. Maheshwari returned to India, where she has recently taken up a hospital job and aims to improve patient life, hoping to one day have all of South Asia (which includes Nepal, India, Pakistan, Bangladesh, and Sri Lanka) no longer be an underserved area in the treatment of eye cancer. The ECF plans to keep its supporters updated on all progress made by our alumni, so stay tuned!

To learn more about ECF-ICO Fellowships, including how to apply for one, click here.


The Global Effort

 

The 2020 Campaign continues to make tremendous strides in the advancement of eye cancer care through the exciting completion of Dr. Milly Shakoor’s 6-month fellowship in retinoblastoma training. This news arrives unitedly with the announcement of another ECF Fellow’s completed training, Dr. Veronica Molleda, from Bolivia. With every fellowship thus offered and completed, The Eye Cancer Foundation and its supporters come closer to fully realizing the goal of training 20 specialists in 20 countries to treat childhood eye cancer.

Eye Cancer Foundation fellowships offer doctors to be trained in the specialized treatment of retinoblastoma, training that they cannot otherwise receive in their home country. These ECF fellowships, partnered with the International Council of Ophthalmology (ICO), are available to candidates from unserved or underserved countries. After doctors complete their six months of training, they agree to return to their home country to start or participate in eye cancer treatment for the unserved.

But what is retinoblastoma? Retinoblastoma is the most common eye cancer in children and affects approximately 8,200 children each year. In developed countries like the United Sates,  the survival rate reaches beyond an astounding 96%, with early diagnosis and treatment being key to saving patients’ lives and sight. However, the incidence rate is higher in developing countries, where most of the children succumb to metastatic retinoblastoma. In areas where children and families have no means of traveling to treatment centers far away from them, these afflicted children often endure their untreated disease untreated, which eventually leads to death. Because no child or family should have to suffer these losses, especially due to inability to simply reach a treatment center, the ECF has launched the 2020 Campaign.

Dr. Milly Shakoor comes from Dhaka, the capital of the highly densely-populated country of Bangladesh, where availability of retinoblastoma care is certainly low. She trained at The Centre for Sight in Hyderabad, India with the renown Director of Medical Services, Dr. Santosh G. Honavar (pictured above), who specializes both in oculoplasty and ocular oncology. Since her return to Dhaka, she has been met with several retinoblastoma cases and continues her treatment of them.

As always, The Eye Cancer Foundation these fellowships could not have been completed without the support of readers and donors — and so, the ECF thanks you for helping to provide hope for eye cancer patients around the world. To our audiences, we hope that you will continue to support these projects through your continued readership, word of mouth, and well wishes!


ECF Fellow Brings Hope to Bolivia

 

It is with the deepest pride that The Eye Cancer Foundation announces the successful completion of Dr. Veronica Molleda’s first 3-month fellowship in retinoblastoma care at the Hospital Infantil de Mexico. Under the tutelage of Dr. Marco Ramirez (pictured right), Head of Ophthalmological Services at the Hospital Infantil and the support of the ECF, Dr. Molleda is now well-equipped with valuable training that will aid eye cancer patients in her native home of Bolivia.

In 2016, The ECF launched the 2020 Campaign with the goal of training 20 Specialists in 20 countries to treat childhood eye cancer. In partnership with the International Council of Ophthalmology, ECF fellowships are available to candidates from unserved or underserved countries. Once the doctors complete their six months of training, they agree to return to their home country to start or participate in eye cancer treatment for the unserved. Dr. Molleda was offered this fellowship by the ECF, which supported her research and stay in Mexico before her return to Bolivia.

Eye Cancer Foundation fellowships offer doctors specialized training in the treatment of retinoblastoma they cannot otherwise receive in their home country. Retinoblastoma is the most common eye cancer in children and affects approximately 8,200 children each year. The incidence rate is somewhat higher in developing countries, where most of the children eventually succumb to metastatic retinoblastoma. In contrast, there exists a better than 96% survival rate in developed countries like the USA. Early diagnosis and treatment is key to saving retinoblastoma patients’ lives and their sight.

During her rotation in Mexico, Dr. Molleda accomplished a great deal of activities. She engaged in bi-weekly meetings with fellow residents to discuss the most recent and relevant issues on retinoblastoma treatment and how to tackle them, as well as presenting difficult cases in retinoblastoma with several oncologists and radiotherapy specialists. She has learned critical information on retinoblastoma, from clinical and differential diagnosis, to Rb genetics. She has developed skills in RetCam operation for outpatient clinics as well as B-scan eye ultrasound for patients with suspicious intraocular tumors. In addition to this, she’s learned critical surgical skills with indirect ophthalmoscope lasers and enucleation with orbital implants. 

“Dr. Molleda will give a superb ophthalmological service to Bolivian patients with retinoblastoma,” says her mentor, Dr. Marco Ramirez, who looks forward to receiving her for another three-months rotation later this year.

The Eye Cancer Foundation humbly thanks its supporters and donors, without whom these fellowships could not have been completed. Every new fellowship awarded and completed provides hope for children whose lives and visions are at risk simply due to their inability to access proper medical care. Your support has always and will continue to make tremendous strides in the field of eye cancer.

 

For more information on The Eye Cancer Foundation Fellowships, including how to apply, click HERE.

 


Fighting for Hope: One Retinoblastoma World 2017

“The One Retinoblastoma World mission is to ensure that every caregiver has access to appropriate knowledge, skills, resources and collaborative opportunity to enable high quality evidence based care for each affected child, survivor and family.”

Every day, new strides are being made towards developing the field of eye cancer. Whether through published papers, international gatherings for ophthalmologists, or patient support group therapy, efficient communication remains a crucial contributor to progress. It was precisely the communication — in fact — between eye cancer patients and ocular oncologists that spearheaded The One Retinoblastoma World Conference that was held October 9-11, 2017 in Washington DC.

At this meeting, families, survivors, and doctors came together to inspire, share, educate, and learn concerning all matters of childhood retinoblastoma. But what, you may be wondering, is childhood retinoblastoma anyway? When born and throughout early stages of life, in areas like the United States where proper medical care is available, children are routinely screened for a childhood eye cancer called retinoblastoma. If diagnosed early, this disease is curable. However, as many as 7,000 children die each year due to improper diagnoses or in-access to proper medical care. No child should die, or suffer avoidable blindness because of that. One Retinoblastoma World is dedicated to breaking down the obstacles that prevent proper treatment for these children.

Ten questions asked by parents and survivors served as a basis for the meeting’s evolution. Because doctors and patients can sometimes be separated by the scope of complicated medical language, these questions better familiarized researchers with the common concerns of patients.

Here were some of the questions:

  • Can we screen for retinoblastoma, and if not, what are the best ways to improve early diagnosis?
  • What do my / my child’s genetics results mean for risk and screening, -current treatment, EUAs after treatment, and for adult life? What do we do if we can’t access genetic testing?
  • How do doctors know when trying to save an eye is dangerous, and removing it is the only option? How do we best care for the socket throughout life?
  • How do doctors and parents make the decision about adjuvant chemotherapy?
  • What is the status of Rb in developing countries? I’ve been contacted by a family in a developing country whose child has Rb. What can I do to help them?
  • What recommendations do you have for long term follow up care and screening in RB1 mutation carriers and children treated with chemotherapy / radiotherapy? How can you help us educate our primary doctors so they take us seriously, and what can we do if we have no access to a survivor / follow-up program?

Each of these questions were answered in a specific panel addressed by researchers, doctors, and clinicians to families and survivors. This proved greatly beneficial to those in attendance. But the collaborative effort did not stop there! The education these sessions provided were not restricted to those able to physically attend. Indeed, the meeting was live streamed to achieve global access for all. As the DC team explains:

“We wanted to make One Rb World 2017 truly a global event. We wanted parents, survivors and medical professionals to join us from across the USA and around the world, even if they couldn’t travel to Washington DC. Live stream viewers were able to interact with speakers and participate in discussions by sending written comments and questions via the live stream system. Their comments were received and shared by several dedicated volunteers in the conference room.”

The DC team is currently working with an editor to publish the livestream for future public viewing. Stay tuned to our blog posts to keep updated on when that will be! Additional information concerning One Rb World 2017 can be found here, including a full list of their program and the subjects of each panel.

One Retinoblastoma World 2017 marks a great advancement in the fight to defeat retinoblastoma. Through the efforts of specialists and advocates combined can we hope to ensure that all children have access to high quality care. We urge you to join us in the fight; have your voice be heard, and be a part of the cure.

To stay updated on all the latest in eye cancer research, please keep our website in your bookmarks!


Mother’s Persistence Leads to Retinoblastoma Diagnosis

When it comes to your children’s health, trust your instincts!

The persistence of an Oklahoma mother likely saved her daughter’s life.

When Kourtney Norton noticed her daughter McKinley was walking sideways, she knew something wasn’t right. So, Kourtney took McKinley to her pediatrician. He mistakenly thought the little girl had an eye infection. When McKinley continued exhibiting strange symptoms, Kourtney took things to the next level.

“I thought, ‘Something is going on,’” she, told KFOR.com. “She’s not really walking with her left side. She’s feeling around.”

Kourtney felt certain something more than an eye infection was causing her daughter’s symptoms. With some persistence, she got her daughter referred to an eye specialist. That led to an Oklahoma cancer center where doctors discovered a large intraocular tumor. It had already caused blindness in McKinley’s left eye and extended into her optic nerve.

Ultimately, Kourtney was diagnosed with retinoblastoma.

Doctor’s had to remove McKinley’s eye. She is now undergoing chemotherapy, but she is likely to survive, thanks to her mom’s persistence.

Retinoblastoma is the most common intraocular childhood cancer. Each year it affects approximately 300 children in the United States and 8,000 worldwide. In the USA, it is usually detected early, and the cure rate is high. But in the developing world the diagnosis is often delayed, resulting in the loss of one or both eyes, and even death. There is a hereditary link in about 40% of cases. The risk factors for sporadic retinoblastoma remain largely unknown.

Like the McKinley’s, parents need to be aware of retinoblastoma signs and symptoms. A white spot in the pupil appearing when light shines into the eye is the most common sign. This often shows up in flash photography. Other symptoms include a lazy eye, vision problems, redness in the white part of the eye, bulging eyes, changes in the color of the iris, and unequally reactive pupils.

Early screening is also important to detect cancer in its beginning stages. You should make sure your pediatrician regularly examines your child’s eyes.

Most importantly, be persistent if you think something is wrong. If you aren’t satisfied with what your doctor tells you, get a second opinion. You know your children better than anybody. Trust your instincts and be persistent. As the saying goes, it’s better to be safe than sorry.

If you are interested in helping spread awareness of retinoblastoma symptoms, click here for more information.


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