Canadian Federal Health Ministry Refuses to Answer D.I.P.G. Children and Families

Dear Petition Supporters,

As many of you know, Petition e-440: May 15^th as National D.I.P.G. Awareness Day was presented to the House of Commons on October 31^st, 2016. The Federal Health Ministry posted a response to the petition on December 14^th, 2016.

Unfortunately, it was an incomplete response that did not give an answer to our petition request: “We, the undersigned, Citizens of Canada, call upon the House of Commons in Parliament assembled to declare May 15th as National D.I.P.G. Awareness Day across Canada”

The Federal Health Ministry’s response can be found here:

http://www.parl.gc.ca/Content/HOC/ePetitions/Responses/421/e-440/421-00841_HC_E.pdf

There are several problems with their response:

(1)        They did not answer the petition. There was no “yes” or “no” regarding whether they will declare a D.I.P.G. Awareness Day across Canada which was the only request of the petition. They simply did NOT answer the petition. After making a complaint, I was instructed that I need to contact the Health Ministry directly or my elected Member of Parliament.

(2)        It included cancer research funding fact: out of $825 million only $29 million went to pediatric cancer research in general (only 3.5%) but failed to mention only 0.09% went to DIPG research.

(3)        There will be only $100, 000 invested in DIPG research this year by the CIHR--how can we find a cure for the most vicious brain tumour with hardly any funding??

(4)        It quoted the $11.7 million Stand Up 2 Cancer will be investing in brain tumour research over the next four years: “The team will focus on glioblastomas in adults and children and on posterior fossa ependymomas of infants.” Glioblastoma cells have been used for over 50 years in DIPG research and have yielded NO POSITIVE RESULTS---this amazing Dream Team will NOT be researching DIPG nor has glioblastoma research translated into any viable treatment options or a cure for DIPG so it has no relevance to this petition.    http://www.standup2cancer.ca/en/press_releases/su2c_canada_announces_new_cancer_stem_cell_dream_team_to_attack_brain_cance

To say that we are heartbroken over the Canadian Health Ministry’s lack of interest in DIPG brain tumour awareness is an understatement. In previous dialogue with Health Minister Philpott, she indicated that it was the lack of researcher interest in DIPG brain tumours that was to blame for the minimal funding and progress.

However, when given a COST-FREE opportunity to help raise awareness, the Health Ministry would not even give an answer. Once again, D.I.P.G. children and families have been ignored and pushed aside for those health issues that bring the health ministry more media coverage.

Please join our continued fight and write the Federal Health Ministry to request that they answer petition e-440: May 15^th as D.I.P.G. Awareness Day across Canada, and that they answer YES:

jane.philpott@canada.ca

Minister_ministre@hc-sc.gc.ca

Remind her that D.I.P.G. children are on borrowed time...

12 Days of Monkey Crew Christmas

The Monkey Crew would like to share some Merry Christmas Cheer with you this holiday season. Sevanah's best buddy, Piper, has recorded a special Christmas song for the occasion. Hope you enjoy it!

If you want to sing along, here are the words:

On the first day of Christmas, Monkey Crew gave to me

A cure for DIPG.

On the second day of Christmas, Monkey Crew gave to me

Two boxing gloves

And a cure for DIPG.

On the third day of Christmas, Monkey Crew gave to me

Three spy pens, two boxing gloves

And a cure for DIPG.

On the fourth day of Christmas, Monkey Crew gave to me

Four whirly birds, three spy pens, two boxing gloves

And a cure for DIPG.

On the fifth day of Christmas, Monkey Crew gave to me

Five snow-mo-biles, four whirly birds, three spy pens, two boxing gloves

And a cure for DIPG.

On the sixth day of Christmas, Monkey Crew gave to me

Six police a-following, five snow-mo-biles, four whirly birds, three spy pens, two boxing gloves

And a cure for DIPG.

On the seventh day of Christmas, Monkey Crew gave to me

Seven picks for mining, six police a-following, five snow-mo-biles, four whirly birds, three spy pens, two boxing gloves

And a cure for DIPG.

On the eighth day of Christmas, Monkey Crew gave to me

Eight vines for swinging, seven picks for mining, six police a-following, five snow-mo-biles, four whirly birds, three spy pens, two boxing gloves

And a cure for DIPG.

On the ninth day of Christmas, Monkey Crew gave to me

Nine penguins prancing, eight vines for swinging, seven picks for mining, six police a-following, five snow-mo-biles, four whirly birds, three spy pens, two boxing gloves

And a cure for DIPG.

On the tenth day of Christmas, Monkey Crew gave to me

Ten horns a-beeping, nine penguins prancing, eight vines for swinging, seven picks for mining, six police a-following, five snow-mo-biles, four whirly birds, three spy pens, two boxing gloves

And a cure for DIPG.

On the eleventh day of Christmas, Monkey Crew gave to me

Eleven Pipers piping----wait, what? Eleven Pipers?! Ten horns a-beeping, nine penguins prancing, eight vines for swinging, seven picks for mining, six police-a following, five snow-mo-biles, four whirly birds, three spy pens, two boxing gloves

And a cure for DIPG.

On the twelfth day of Christmas, Monkey Crew gave to me

Twelve engines revving, eleven Pipers piping, ten horns a-beeping, nine penguins prancing, eight vines for swinging, seven picks for mining, six police a-following, five snow-mo-biles, four whirly birds, three spy pens, two boxing gloves

And a cure for DIPG.

Written by Sevanah's Mama and Daddy for their Baby Boo. Christmas 2016.

Petition e-440: May 15th as National DIPG Awareness Day Across Canada

Monkey Crew Against DIPG is asking that you take five minutes to copy and paste an email to Health Minister Jane Philpott to let the Federal Health Ministry know that you have signed petition e-440 and why it is so important.

Petition e-440 was tabled in the House of Commons on October 31st by sponsor MP Stephen Fuhr. It was just recently brought to our attention that any decisions regarding the petition will be done by the Federal Health Ministry. As the petition has already been tabled, please send your email as soon as possible.

All the emails to your local MPs are not wasted! They have helped us to raise awareness for D.I.P.G. brain cancer, generate interest by MPs all over Canada in D.I.P.G. brain tumour research initiatives, and given D.I.P.G. children and their families a louder voice.

Find a link to a pdf template letter to help you with your email here. Or copy and paste the template letter below into an email for Health Minister Jane Philpott. Remember to add your name to the bottom.

Dear Honourable Jane Philpott,

I am writing to bring your attention to petition e-440: May 15^th as a National D.I.P.G. Awareness Day, which was tabled in the House of Commons on October 31st. D.I.P.G. is a childhood brainstem tumour with a 0% survival rate that receives little research funding and has had no advances in treatment that extend survival time in over 50 years.

Brain cancer is now the leading cause of cancer deaths amongst children and D.I.P.G. tumours account for 80% of these deaths yet many people, including health care professionals, have never heard of D.I.P.G. Declaring May 15^th as National D.I.P.G. Awareness Day costs nothing yet its reward is far-reaching. A dedicated, annual DIPG awareness day:

1)   Acknowledges the severity of D.I.P.G. and its widespread impact on Canadian families, friends, and communities

2)   Raises public awareness of D.I.P.G. brain cancer

3)   Gains researcher and practicing professional’s attention which, in turn, increases D.I.P.G. research initiatives and the likelihood of earlier detection

4)   Opens the door for more dialogue about D.I.P.G. detection, treatment and research between D.I.P.G. families, the public and the medical community

5)   Honours the fallen children who have died from D.I.P.G. and the children who are still fighting

6)   Is the first step towards getting dedicated, annual D.I.P.G. research funding and early detection initiatives

Supporting petition e-440 is an opportunity for you to correct a Canadian health tragedy that has been devastating families, friends, peers, and communities all over Canada for over 50 years. Diffuse Intrinsic Pontine Glioma (D.I.P.G.) is an aggressive, inoperable brainstem tumour with a median survival time of only 9 months, and 90% of children diagnosed with DIPG will die within 2 years of their diagnosis. Children remain mentally intact while they lose their ability to see, walk, chew, swallow, talk, hear and breathe before their heart stops beating. There is presently NO cure or viable treatment option available in Canada that extend symptom-free survival time or overall survival time for children suffering with D.I.P.G.

I am asking that the Canadian Health Ministry support petition e-440 and name May 15^th as National D.I.P.G. Awareness Day across Canada.

Kind Regards,

your name

Send your email to both:

jane.philpott@canada.ca

Minister_ministre@hc-sc.gc.ca

"Together We Can Give These Children Hope for a Future"

Protect Your Peepers!

Preschool Eye Exam Basics

Did you know that children between 2 and 5 years of age should have at least one comprehensive eye exam?

It is recommended that preschool children have a comprehensive eye exam around three years of age and another eye exam before they start kindergarten. If your preschooler requires glasses or there is a family history of vision issues, it is recommended that they visit an optometrist annually.

Preschoolers are still fine-tuning their visual skills and it is imperative that any vision issues be caught before they cause long-lasting damage to their vision or impede other areas of development. Eye exams are important at this age because children's development and learning are directly connected to the following skills associated with good eyesight:

• near vision
• distance vision
• binocular (two eyes) coordination
• eye movement skills
• focusing skills
• peripheral awareness
• hand-eye coordination

What to Expect During the Exam

Come prepared to share your child's birth history, medical history and family history. Prepare your child beforehand by explaining that the optometrist will be looking at their eyes--never surprise them with a visit, give plenty of warning so they are comfortable having their eyes examined. Choose a time that works best for your child (ex. avoiding naptime or the end of a busy day) to provide the best opportunity for a successful visit. 

Common Eye Tests Used for Young Children:

• LEA Symbols: an eye chart for young children between 3 and 6 years of age who cannot yet read that uses symbols or shapes (ex. apple, house, square, circle) 
  

• Retinoscopy: a test that shines light into the child's eye to observe the reflection from the back of the eye (retina) which helps determine a child's eye glass prescription

• Random dot stereopsis: uses special patterns of dots and 3-D glasses to measure how well your child's eyes work together
  

• Tumbling E Chart: all characters on the chart are a capital letter "E," in different spatial orientations (rotated in increments of 90 degrees) and the optometrists will ask the child to use either hand (with their fingers extended) to show which direction the "fingers" of the E are pointing: right, left, up or down
  

Warning Signs

If your Preschooler is struggling with any of the following symptoms, book a comprehensive eye exam as soon as possible:

• red, itchy or watering eyes
• sensitivity to light
• an eye that consistently turns in or out
• tilting their head to see better
• squinting, rubbing the eyes, or excessive blinking
• a lack of concentration
• covering or closing one eye
• irritability or short attention span
• holding objects too close
• avoiding activities that require near vision, such as reading or coloring, or distance vision, such as playing ball or tag
• visible frustration or grimacing
• complaining of headaches or tired eyes

FYiDoctors provides information for each province regarding coverage for eye exams. BC MSP covers ONE full eye examination yearly for children birth to 18 years.

Resources

All About Vision

Canadian Association of Optometrists

Canadian Pediatric Society

Canadian Doctors of Optometry

Eye Glass Guide

Protect Your Peepers!

Infant Eye Exam Basics

Did you know infants should have their first comprehensive eye exam by 6 months?

Why so young you ask? Vision development is a crucial part of your baby’s overall development. It affects areas such as fine and gross motor skills, cognitive and language development and even your baby's emotional development.

At six months, it is easier for an Optometrist to assess your child’s development and determine if a vision issue may be present because developmental milestones are more obvious during this stage of growth and learning. Early intervention at this age lessens damage that could lead to lifelong vision issues.

Infant Eye Exams

During an infant eye exam an Optometrist will be checking the health of your baby's eyes and looking for anything that might interfere with normal and continuing vision development. This includes looking at:

• Age appropriate Visual Acuity
• Refractive Status
• Eye Movement (eye motility)
• Eye Alignment/Binocular Potential (eye teaming)
• Visual Integration/Hand-Eye Coordination
• Eye Health

Be prepared to answer questions about your child's birth, health history and family history. During the eye exam you will be asked to hold your baby while the optometrist examines their eyes--be prepared to participate in activities or games that help the optometrist get a thorough look at your baby's vision skills.

Vision Skills Your Baby Is Developing

In the first six months, infant eyes are developing the ability to:

• work together
• focus clearly at different distances quickly, accurately, and for sustained periods of time
• smoothly follow moving objects and to move accurately from one object to another.

At Birth:

• your baby sees only in black and white and shades of gray
• a newborn infant's eyes don't  yet have the ability to accommodate or focus on near objects

During the First Month:

• one week after birth, they can see red, orange, yellow and green
• it takes a little longer for them to be able to see blue and violet
• it is normal for your baby's eyes to sometimes appear to not be working together as a team yet. For example, one eye may occasionally drift inward or outward from proper alignment

At 2-3 Months:

• develop sharper visual acuity during this period, and their eyes are beginning to move better as a team
• learning how to shift their gaze from one object to another without having to move their head

4-6 months:

• see more distinctly and are developing depth perception 
• move their eyes quicker and more accurately to follow moving objects

• Visual acuity improves from about 20/400 at birth to approximately 20/25 at 6 months of age
• Color vision should be similar to that of an adult by six months

7-12 months:

• infants become mobile and begin learning how to coordinate their vision with their body movements

• infant's eyes also begin to change color during this time

You can help your baby's vision development with simple games and activities.

What to Watch for...

Eye alignment problems

It takes a few months for an infant's eyes to develop eye teaming skills. However, if you feel one of your baby's eyes is misaligned constantly or does not move in synch with the other eye, contact your family doctor or optometrist as soon as possible.

Some terms you may hear from your Optometrist:

Amblyopia or lazy eye

Astigmatism 

Hyperopia or farsightedness

Myopia or nearsightedness

Strabismus 

Premature Infants

Premature babies have a greater risk of developing eye problems than full-term babies so it is extremely important for them to have a comprehensive eye exam at 6 months. Two of the main vision concerns with a premature baby are:

Retinopathy of prematurity (ROP): the abnormal replacement of normal tissue in the retina with fibrous tissue and blood vessels. ROP can cause scarring of the retina, poor vision, retinal detachment and even blindness. All premature babies are at risk of ROP.

Nystagmus: the involuntary, back-and-forth movement of both eyes which usually causes the eyes to drift slowly in one direction and then "jump" back in the other direction. The eye movements are usually horizontal, but they can be diagonal or rotational as well. It can be present at birth, or it may develop weeks to months later.

To keep up to date with Protect Your Peepers Activities and Events in the community please visit Monkey Crew Against D.I.P.G. on Facebook or our website.

Resources:

All About Vision

InfantSEE

Doctors of Optometry Canada

American Optometric Association

Protect Your Peepers!

Comprehensive Eye Care for Children

Here is a PDF Protect Your Peepers Brochure to print

Monkey Crew Against D.I.P.G. has started the Protect Your Peepers Campaign to encourage parents to seek quality, comprehensive eye care for their young children. An important part of our mandate is to provide parents and caregivers with accurate, credible information. As well as, guide them towards easily accessible resources that best support their children's health and well-being. Brain Tumour Foundation of Canada has also come onboard with our Protect Your Peepers Campaign for Childhood Cancer Awareness Month this September!

A Comprehensive Eye Exam conducted by a qualified Optometrist is a non-invasive method to detect ocular symptoms of health and sight issues. The goal
of this initiative is earlier detection of pediatric brain tumours, such as DIPG, in young children. However, it comes with the benefit of maintaining good overall eye health for your child.

"A comprehensive eye exam ...can often be the first line of detection of a brain tumour" -Dr. Lee, DO, BSc

Our hope is that with earlier detection of childhood brain tumours, we will:

• Increase survival rates with earlier intervention
• Provide greater symptom-free survival times
• Gain insight into the biology and etiology of childhood brain tumours before they are in aggressive progression
• Find viable treatment options that lead to a cure 

Comprehensive Eye Exams for Children

Ensure Your Child Receives a Quality Eye Exam

1.) Do Your Homework

• Check the Optometrist's qualifications
• Check the clinic's reviews
• Check the information the clinic provides on their website

You can also use the doctor locator from the BC Doctors of Optometry website to find an optometrist in your area.

2.) Ask Questions

• Ask what a comprehensive pediatric eye exam includes at their clinic and compare it to our list below
• Ask ahead of time if pressure testing or other brain tumour detection tests are available for young children

Young children do not need to know how to read to have an eye exam. The Optometrist will use the Tumbling E chart or Lea Symbol system (shapes) for the exam.

Not All Eye Exams Are Comprehensive Eye Exams!

It is important for parents to understand that vision screenings conducted at school and vision evaluations provided by the child's doctor are NOT comprehensive eye exams and do not adequately assess a child's overall eye health and visual abilities.

"All children should receive a comprehensive eye and vision examination assessing and treating any deficiencies in ocular health..." -Canadian Association of Optometrists

Warning Signs

Book a comprehensive eye exam if your child is suffering with any of the following symptoms:

• Red, itchy or watering eyes
• Sensitivity to light
• An eye that consistently turns in or out
• Tilting their head to see better
• Squinting, rubbing the eyes, or excessive blinking
• A lack of concentration
• Covering or closing one eye
• Irritability or short attention span
• Holding objects too close
• Avoiding activities that require near vision, such as reading or coloring, or distance vision, such as playing ball or tag
• Visible frustration or grimacing
• Complaining of headaches or tired eyes

Please follow Monkey Crew Against D.I.P.G. on Facebook to stay up to date on our Protect Your Peepers Campaign and Childhood Cancer Awareness Initiatives. For more information about D.I.P.G., the Monkey Crew and Sevanah's story visit Monkey Crew Against D.I.P.G.

For my fellow research enthusiasts:

Clinical research supports the theory that pediatric eye exams can be an effective, non-invasive tool to detect brain tumours in young children.

Ocular manifestations of brainstem tumor

Ophthalmic Features of Outpatient Children Diagnosed with Intracranial Space-Occupying Lesions by Ophthalmologists

Eye findings in paediatric brain tumour - data basis for a follow-up proposal

Disrupting NOTCH Slows Diffuse Intrinsic Pontine Glioma Growth, Enhances Radiation Sensitivity, and Shows Combinatorial Efficacy With Bromodomain Inhibition

Ophthalmological findings in pediatric brain neoplasms: 58 cases

Evaluation of ophthalmic manifestations in patients with intracranial tumours

The Effects of Primary Brain Tumors on Vision and Quality of Life in Pediatric Patients

Torticollis in children: an alert symptom not to be turned away

Eye Exam Leads to Life-Saving Diagnosis for Little Boy

Doctors of Optometry Canada

Some encouraging stories:

Teenager whose mother believed his headaches were fromplaying too many computer games is diagnosed with a brain tumour after a tripto the opticians

Trip to the optican saves life of girl, 13.

Pregnant mum and unborn daughter's lives saved by opticianwho discovered 'exploding' brain tumour

This student went to his optician for an eye test – and theydiscovered a life-threatening brain tumour

Dad who suffered 'migraines' saved as eye test spots CANCER