Projects & Opportunities

Due:  August 21st, 2020

What do you want us to know about kids and injections?  Help us improve the process for kids around the world - Take the survey!

iCAN is helping to create a better understanding of what kids need when dealing with injections.  

We invite all kids (and young adults) to help us by taking this survey.  

 

Enter this link in your browser or click below.  

https://www.surveymonkey.com/r/DD38T28

Due:  July 30th, 2020

Are You An Expert with These Conditions?  Read more to learn how you can help.

We have a sponsoring partner that has asked if there are any iCAN youth members living with the following rare diseases:

  • Alexander (neurological)

  • Lafora (epilepsy)

  • Pompe (lysosomal storage)

 

The partner would like to engage in a brief patient-voice focus group with the kiddo(s) and ask the following questions.  Parents/Guardian/Siblings are invited to join in as well.  The date and time will be set after I receive response (just email me directly with youth member information) by July 30th

Due:  EXTENDED September 30th, 2020

Parents and Kids - Share Your Voice In a Survey

Your help is needed! Share your experiences of using devices (e.g. measuring spoons, dosing cups, inhalers) to take medicine.

The European Paediatric Formulation Initiative (EuPFI) works to improve the preparation of better and safe medicines for children. One area they are interested in is the “gadgets” or devices (e.g. measuring spoons, dosing cups, inhalers) that are used to help patients take their medicine.

They are doing a research study to find out what kind of gadgets kids and young people use to take their medicines and how easy they find using them, to help find ways of making the devices more user friendly.

PARENTS/CAREGIVERS and YOUTH MEMBERS are invited to help with this project and share your experiences, by taking part in a short survey:  https://tinyurl.com/eupfican-devices-survey  

Due:  June 10th, 2020

Calling all Kid Science and Medicine Buffs, Actors, and Actresses

We have a very fun opportunity for kids that have a passion in medicine and science, and also, feel comfortable in front of a camera answering questions and reading a script.  If this fits you, please reach out by July 30th, 2020 to let us know so we can pair you up with the Pediatric Trials Network to share your expertise!

Due:  June 30th, 2020

Introducing Virtual 'iCAN Leanne'!

iCAN President Leanne is missing her friends at iCAN, so we decided to have some fun and introduce virtual 'iCAN Leanne" to share the fun of what our youth members and adults are doing around the world.  To participate in this project, download, print or simply share iCAN Leanne in a picture that shows where you are or what you are doing during the time of the pandemic.  iCAN is excited to share your voice and to help remind the world of the many great things that our iCAN community is doing.  Send your pictures to info@iCANResearch.org and we will feature on our website.

Due: April 30th, 2020

Youth Speaker Panel Needed

If you are a youth member of iCAN and would like to be a part of a panel of youth speakers at the upcoming May 18th, 2020 virtual conference for the International Society of Pediatric Innovation (iSPI) during a session led by iCAN President, Leanne West, we would love to hear from you.  Four youth members will be considered.  Sign up today!  

Due: April 30th, 2020

Join a Virtual Council for Young Adults living with Epilepsy

KIDS Illinois and Lurie Children’s Epilepsy Center are currently working with the American Academy of Pediatrics (AAP) on a research project called Transforming Health Care for Children and Youth with Epilepsy (CYE).

 

For this project, the AAP would like to create a Council for Young Adults with Epilepsy across the United States. This will be a virtual council and the participants on this council will need be 18 years and older… or turning 18 very soon.

 

If interested, complete this very short survey:  https://www.surveymonkey.com/r/QPMQBWY.

Due: March 30th, 2020

Participate in Online Focus Group

iCAN Youth Members living with chronic or rare conditions are invited to participate in an online focus group with iCAN/UCB/Mindspot in an interactive, fun portal, while at home.  The event is scheduled for May, 2020 but we need you to sign up today.  Spaces are limited, so hurry! 

Due: January 15, 2019

Be A Researcher Part 2.

iCAN Youth Members and Adults are asked to help the Pediatric Trials Network (PTN) by reviewing language in a CONSENT.   

 

Please review the documents using the attached survey and share your feedback to the wording.  We want to know if it is understandable and easy-to-read, or if not, tell us.  Thank you for your help!   

Due: October 31st, 2019

FDA Patient and Caregiver Connection Program 

iCAN would like to help the FDA to promote the Patient and Caregiver Connection program by sharing your experience with specific diseases and devices. The goal of sharing this information is to better understand the youth population.  This survey is less than 4 minutes long.  

Due: October 25 - Oct 29, 2019

AAP Conference

We are looking for youth interested in representing iCAN at the American Academy of Pediatrics conference. You will present our organization at the iCAN booth. A parent or guardian must accompany each iCAN youth member. This event will be held in New Orleans, Louisiana.

Due:  August 30th, 2019 

Take the NORD Survey 

NORD's Policy team is conducting a survey to help guide our future work. We invite you to take a moment to share your experience to help us better prioritize the needs of rare disease patients and families just like you--by taking the survey below.

Aug 18- Aug 20, 2019

PEDS2040

We are seeking youth members to attend the PEDS2040 Conference https://peds2040.orgin Huntington Beach, CA. Youth members will be asked to work at an iCAN table and attend or assist with the Young Inventor Workshop. A parent or guardian must accompany each iCAN youth member.

Due:  EXTENDED December 30th, 2020

Hey Kids - iCAN is Writing A Book - share your story

On July 2nd, 2020, the iCAN Youth Council will be collecting youth "iCAN" statements to share what kids around the world have done to change their challenges into "I CAN!!!!"  - Simply write up your statement to show how you made a difficulty into a success using just 3-4 sentences. Illustrations are welcomed too.  Share back to info@iCANResearch.org

Due:  August 21st, 2020

Take the Survey to Tell Us What You Want for the Next Event

Dr. Anthony Chang from iSPI and AIMed would like to create a series of talks designed for kids to share their voices.  

To help us better design these sessions, we need iCAN Youth Member Feedback.  

Take the survey below by Friday, August 21, 2020 to help us create the best event!  

Due:  June 30th, 2020

Share Your Story 

Eli Lilly and Company (Lilly) is partnering with iCAN to feature art created by iCAN members under the age of 18.  Every submission that meets the criteria below will appear on the newly created website for pediatric research on Lilly TrialGuide.  The iCAN leadership team will also include the images on the iCAN website.

We would like you to submit an image that reflects your experience with healthcare, whether a photo, drawing, sketch, poem, etc.  Please check out the attached flyer.  The key is to be creative and tell your story.

Here are the criteria for submission:

Due:  July 22nd, 2020

Kids - Take the OHANA Study Survey

Your voice matters!  We have many ideas for sharing information about a pediatric clinical research study and need your help to better understand what children around the world need.  To take this brief study, visit SURVEY IS CLOSED 6/22/20 or click on the link below.  Hurry, this survey is closing soon!

Due:  June 12th, 2020

Young Authors Wanted

Calling all young authors for a chance to win a trip to Philadelphia to visit The College of Physicians of Philadelphia, CHOP Research Institute and $1,0000 cash prize.  To enter, learn about Dr. Hilleman, and write a 500-600 word essay that answers the question, “How was Dr. Hilleman’s integrity important to his success, and how is integrity important to you?” Essay should be written in English using complete sentences and appropriate grammar. One entry per person.  Application through the link below.  Good luck!  

Due: April 30th, 2020

Adult and Youth living with Rare Disease to Participate in Virtual Global Conference 

iCAN has partnered to share one youth voice and one adult voice during from 11:00 am - 12:00 noon, eastern time, on May 20th, 2020 during a virtual event dedicated to Rare Disease.  If you are diagnosed with a Rare Condition and would like to take part in this virtual experience through sharing your personal journey, participation in clinical research and iCAN, we would love to hear from you.  Contact us today to learn more.   

Due: April 30th, 2020

CANCELLED Due to FREE Virtual Summit - iCAN Summit Scholarship

iCAN Youth Members may be eligible to earn one of two scholarship(s) in memory of two special iCAN Youth Members; Kate and Felix.  The scholarships are created to support attendance at the 2020 iCAN Research Summit in Lyon, France from July 14th to July 18th, 2020.  Click on the link to see the rules and how to apply.  We can't wait to see what you do!  Good luck! 

Due: EXTENDED March 30th, 2020

Join iCAN Youth Council

Calling all iCAN youth!!  Are you interested in joining a fun group  of collaborative innovators interested in learning more about pediatric medicine and advocacy in healthcare?  Then, join us at iCAN Youth Council.  If you are interested, please send a message to the 2020 iCAN Youth Council Leader, Ananya Ganesh at agan1213@gmail.com  - We hope to hear your voice. 

Due: Until Full

Be a Beta Tester

Our partner, Thrust, is looking for iCAN Youth Members to help with beta testing. 

 

In game development, before releasing the game officially, it is often first released in two stages called the alpha and beta phases. In the beta phase, the game is likely to contain a number of issues and bugs and we need your help to make sure we find them all! We’ll also value any and all input you have to make our game as fun as possible! 

Due: October 21st, 2019

Two Parent Advisors Needed

In partnership with the Pediatric Trials Network (PTN), we are seeking two parents of young children that have experienced acute pain. The two selected parents will be asked to join the external advisory board for the Clinical Outcome Assessments for Acute Pain Therapeutics in Infants and young Children (COA-APTIC), aimed at developing a core set of clinical outcomes assessments for infants and young children (0 – 2 years of age) undergoing treatment for acute pain.  To participate, please send an email using the link below.  

Due: October 3rd, 2019 

FDA Meeting in Maryland

Attention: YOUTH MEMBERS LIVING WITH A RARE CONDITION!!!!

 

We need 3-4 youth diagnosed with a RARE illness, ages 8 -19 to particpate in an all-expense paid trip to "Advancing the Development of Pediatric Therapeutics (ADEPT 6) Workshop", November 11th-12th, 2019.

This will include time as part of speaking panel, plus personal interviews.  Questions to be provided in advance.  Must be willing to share diagnosis.  

Sign up by Aug 28th, 2019  

Panelists for Georgia Bio

iCAN is looking for four kids to tell their stories on "Empowering the Patient"  October 8 at 3:30 PM at the Cobb Galleria, Atlanta, GA. 

Due:  August 30th, 2020

iCAN Youth Council Wants to Know... take a survey!

iCAN's youth council is conducting a study on how the COVID-19 pandemic has affected aspects of your life. Whether remote learning hampered your learning experience or quarantine reduced your ability to receive necessary medication, we want to hear from YOU. It will take less than 2 minutes of your time but your feedback will be invaluable in helping policy makers. 

 

If you have any questions please feel free to contact Ananya Ganesh at agan1213@gmail.com. Thank you!

Survey in link below:

Due:  July 30th, 2020

Take 2 - Are you a kid actor, science buff or want to be a doctor?  

We have a very fun opportunity for kids that have a passion in medicine and science, and also, feel comfortable in front of a camera answering questions and reading a script.  If this fits you, please reach out by July 30th, 2020 to let us know so we can pair you up with the Pediatric Trials Network to share your expertise!

Due:  July 4th, 2020

iCAN Summit - Chapter Poster

While we know that your time this year was cut short with your iCAN chapter friends due to sheltering-in-place around the world, we would still love to share the good work at each chapter.  To share your work, we would like you to create a poster with your chapter name, the iCAN logo, and pictures showing what you worked on.  We need one poster per chapter and will share them during the summit.  To submit your poster, send it to info@icanresearch.org

Due:  June 5th, 2020

Take a 2 - Minute Survey 

iCAN, in partnership with a team of clinical researchers, has a very brief survey on naming a potential new clinical research project for teens.  Kids, please take a moment to share your voice and help be part of the future.  It will take less than 2-minutes to complete and may be done through the link below, on any device.  

Due:  June 30th, 2020

Take A SnapShot of What You are Doing At Home to Stay Safe and Healthy 

During this time, many of our youth members are 'sheltering-in-place' at home.  iCAN would like to share what our members are doing to stay busy.  Take a picture and share to info@icanresearch.org what you are working on... doing homework, helping your neighbors, cooking with your family, taking care of pets, or other interesting things.  We will share your picture with the tag #iCANMakeADifference to help inspire others.  #TogetherweCan #iCAN

Due: April 30th, 2020

Share your expert voice and tell us what you think about a new Pediatric Clinical Research project

Calling all iCAN Youth Members - are you ready to help share your expertise? Join in and take a quick survey to help guide pediatric clinical research. 

#iCANMakeADifference

Due: April 15th, 2020

Share Your Expert Voice and Join a Fun Virtual Focus Group

Join in for a fun and exciting event! 

 

PARENTS:

Tuesday, April 14th at 5:00pm EST

 

Please join my meeting from your computer, tablet or smartphone:
https://global.gotomeeting.com/join/892841485

You can also dial in using your phone for audio if needed:
United States: +1 (872) 240-3412
Access Code: 892-841-485

YOUTH MEMBERS: 

Wednesday, April 15th at 4:00pm EST

Please join my meeting from your computer, tablet or smartphone.
https://global.gotomeeting.com/join/636260701

You can also dial in using your phone.
United States: +1 (872) 240-3212
Access Code: 636-260-701

Due: January 15, 2019

Be A Researcher Part 1.

iCAN Youth Members and Adults are asked to help the Pediatric Trials Network (PTN) by reviewing language in an ASSENT.   

 

Please review the documents using the attached survey and share your feedback to the wording.  We want to know if it is understandable and easy-to-read, or if not, tell us.  Thank you for your help!   

Due: Until full

iCAN Asthma Kids

Thrust Interactive is developing a gamified asthma app that empowers kids (and parents), by providing personalized support to help make managing asthma as simple and easy as possible. Treks identifies the challenges that a child has with treatment adherence and guides them on a personalized treatment support journey in an engaging and motivational way.


Treks is currently in development and we need your help! We need feedback from kids and parents to help us make Treks as fun and engaging as possible. To get that feedback we are inviting iCAN members to join the Treks Asthma Advisory Council. As part of this select group, you will have the opportunity to share your thoughts and provide product direction. You will get a first look at Treks and when it's ready for testing, you will get to try it out for yourself. During this time, we may send out short surveys, and ask you to text us your ideas as they come to mind, or schedule a phone call with us and others on the Advisory Council to brainstorm ideas on how to make Treks better.


If you're interested, please reach out directly to our Director of Innovation and Research, Shane Owens at shane@th.ru.st. Thank you for your consideration!

Due: October 15th, 2019 

Clinical Study Survey

iCAN has a new opportunity for kids ages 1-17 (parents can share on behalf of younger ones) to share their voice through a special survey designed just for them.  To take the survey, click below.  Your thoughts matter!  

Due September 5th, 2019  

Take our iCAN Partner Survey

iCAN invites you to take our Partner Survey and share your voice.  To take the survey, please click below.  

Due:  August 12-25, 2019 

PARADIGM Interviews

One of our international community partners, PARADIGM, would like some feedback to better understand what kids think of research, so that they can more effectively help to promote 'patient-centered care' that supports our young person.  Attached are two informational sheets - one for kids and one for parents.