Rare Disease Day is a movement to bring awareness to rare diseases and work towards equity in social opportunity, health care, and access to diagnoses and treatment for those living with a rare disease.

This year PRRF will celebrate Rare Disease Day by:

• Asking our supporters to post a photo of yourself/your family/your colleagues wearing stripes on your social media pages. Don’t forget to share why you support PRRF and use hashtags #PRRF and #RareDiseaseDay

• Share your story or make a dedication to someone with a rare retinal disease.

  SHARE YOUR STORY OR MAKE A DEDICATION

• Visit our Facebook page on February 28, 2024 at NOON ET to watch our awareness video celebrating the impact our supporters have made on rare pediatric retinal diseases and learn more about the 7 diseases PRRF serves
  CLICK HERE for PRRF’s Facebook Page

• For more downloadable tools including filters, frames, virtual backgrounds and more, visit https://www.rarediseaseday.org/downloads/

• Download posts to share on your social media using the links below.

DOWNLOAD A SOCIAL MEDIA IMAGE #1 (Facebook, LinkedIn)

DOWNLOAD A SOCIAL MEDIA IMAGE #2 (Facebook, LinkedIn)

DOWNLOAD A SOCIAL MEDIA IMAGE #3 (INSTAGRAM)

DOWNLOAD A SOCIAL MEDIA IMAGE #4 (INSTAGRAM)

DOWNLOAD A SOCIAL MEDIA IMAGE #5 (TWITTER)

DOWNLOAD A SOCIAL MEDIA IMAGE #6 (TWITTER)

Register today for PRRF's Annual Family Connection Conference

Saturday, January 20, 2024

10:00 am - 1:30 pm ET.

This year's Family Connection Conference will offer a hybrid experience, featuring both in-person and virtual components. The in-person event will occur at the Oakland Center, located at Oakland University in Rochester, MI, while the virtual component will be conducted through Zoom.

EVENT REGISTRATION IS NOW CLOSED.

EVERYONE WHO REGISTERED WILL RECEIVE A VIRTUAL LINK VIA EMAIL ONE HOUR BEFORE THE EVENT BEGINS.

PLEASE CHECK YOUR SPAM/JUNK FOLDER FOR THE EMAIL.

AGENDA:

10:00 AM-10:15 AM - Welcome and Introductions

10:15 AM-10:35 AM - Research Updates

10:35 AM-11:05 AM - Q&A

11:05 AM-11:15 AM - Presentation

11:15 AM-12:00 PM - Break Out Rooms

• Room #1 Low Vision - Functional Blindness. We are navigating life’s maze without relying on sight.

• Room #2  Total Blindness - Light Perception. Seeing the essence of existence in shades of light.

• Room #3 Blindness and More | Where blindness is just the beginning of a unique journey.

12:00 PM-12:15 PM - Break

12:15 PM-1:00 PM - Guest Speaker - Heather Hutchison

From Avoidance to Acceptance: Nurturing Healthy Identities with Blindness

Heather Shares her journey from despair to finding acceptance and hope, and practical tips she’s learned along the way to help others get there.

1:00 PM - Closing Remarks

1:15 PM - PRRL Lab Tour

Planning to bring your children to the in-person event? Don't worry! We'll have volunteers available to lead children in fun and educational activities, allowing adults to fully engage in the conference sessions.

If you have any questions, contact Luisa Recchia at lrecchia@pediatricrrf.org.

We hope you can join us!

Financial planning for the future can be difficult to navigate, but it is especially difficult for families affected by disabilities. In this webinar, Rick Deyo will guide families in various financial tools available to plan for the future care of their child with vision loss. Discussion topics will include exploring life insurance to cover future medical, educational and housing needs for your child; the importance of preparing a Last Will and Testament or Special Needs Trust; and much more. 

Rick has a Master of Science in Financial Services with a Legacy Concentration. He is a Financial Consultant and Founder of Intrust Financial Group, Inc; and a Chartered Advisor in Philanthropy Wealth Management. Most importantly, Rick is a passionate PRRF volunteer and has lived experience with Retinopathy of Prematurity (ROP). View his life journey video here.

Pre-registration required: Register here

Cost: Free

Questions? Email Stephanie Saville, PRRF Foundation Manager at ssaville@pediatricrrf.org.

Advisory services provided through Creative Financial Designs, Inc., a registered investment advisor, and securities offered through CFD Investments, Inc., a registered broker/dealer, member FINRA/SIPC, 2704 S. Goyer Rd, Kokomo, IN 46902, 765-453-9600. NEITHER InTrust Financial Group, Inc. NOR the Pediatric Retinal Research Foundation Inc. are not affiliated with Creative Financial Designs Inc. or CFD Investments Inc. (collectively, "CFD").  ANY INFORMATION OR WRITTEN MATERIAL PROVIDED TO YOU BY CFD, INCLUDING BUT NOT LIMITED TO INFORMATION OR WRITTEN MATERIAL CONCERNING THIRD PARTY VENDORS OR SERVICE PROVIDERS, SHOULD NOT BE CONSTRUED AS ADVICE OR IN ANY WAY AN ENDORSEMENT OR RECOMMENDATION OF InTrust Financial Group, Inc. OR the Pediatric Retinal Research Foundation Inc.

Join the Family Advisory Committee for a heartwarming "fireside chat" where parents can connect with each other and share their experiences. This event aims to provide a safe and supportive space for parents to ask questions and receive guidance on how to best support their child. Through open and honest conversations, attendees will gain valuable insights into the challenges and triumphs of raising a visually impaired child, and learn practical tips for navigating the world with their child's unique needs in mind. Come join us for an evening of warmth, community, and growth.

Rare Disease Day is a movement to bring awareness to rare diseases and work towards equity in social opportunity, health care, and access to diagnoses and treatment for those living with a rare disease.

This year PRRF will celebrate Rare Disease Day by:

• Asking our supporters to post a photo of yourself/your family/your colleagues wearing stripes on your social media pages. Don’t forget to share why you support PRRF and use hashtags #PRRF and #RareDiseaseDay

• Share your story or make a dedication to someone with a rare retinal disease.

  SHARE YOUR STORY OR MAKE A DEDICATION

• Visit our Facebook page on February 28, 2023 at NOON ET to watch our awareness video celebrating the impact our supporters have made on rare pediatric retinal diseases and learn more about the 7 diseases PRRF serves
  CLICK HERE for PRRF’s Facebook Page

DOWNLOAD A SOCIAL MEDIA IMAGE #1 (Facebook, LinkedIn)

DOWNLOAD A SOCIAL MEDIA IMAGE #2 (Facebook, LinkedIn)

DOWNLOAD A SOCIAL MEDIA IMAGE #3 (INSTAGRAM)

DOWNLOAD A SOCIAL MEDIA IMAGE #4 (INSTAGRAM)

DOWNLOAD A SOCIAL MEDIA IMAGE #5 (TWITTER)

DOWNLOAD A SOCIAL MEDIA IMAGE #6 (TWITTER)

Join Chuck Walls as he talks about his son Collin’s struggles and successes through high school and beyond. There will be time for Q&A after the presentation.

Read his latest article on the PRRF website here.

Register for the workshop here.

Register now for our Family Connection Conference on January 21, 2023, from 10:00 am - 1:30 pm ET. This conference is made possible by our generous PRRF Donors.

This year’s virtual conference focused on education for parents and caregivers will include research updates with the doctors, featured speakers, and breakout sessions.

AGENDA

10:00 AM-10:15 AM - Welcome & Introductions, Antonio Capone, Jr., M.D., PRRF Foundation President & Luisa Recchia, Community Outreach Coordinator

10:15 AM-10:45 AM - Research Update, Kimberly Drenser, M.D., Ph.D., PRRF Board Member, Research Committee Co-chair

10:45 AM-11:15 AM - Q&A Drs. Capone & Drenser

BREAK

11:15 AM-12:30 PM Breakout Rooms

Breakout Rooms Session 1

#1 Siblings: Rivalries, Empathy & Support

In this breakout room, we will discuss the effects—both positive and negative—that visual impairment can have on the relationship between siblings of all ages and what siblings and their parents can do to foster a supportive and encouraging family environment.

#2 Every Family Member’s Role in Advocacy

In this breakout room, we will discuss how the various members of visually-impaired children’s families can play a vital role in advocacy. This includes parents, siblings, and the children themselves.

Breakout Rooms Session 2

#3 Extended Family: Engaging & Empowering Participation with Extended Family

In this breakout room, we will discuss how extended family members can be engaged and empowered to participate in the different aspects of a family member with retinal disease. This starts with a deliberate plan coupled with understanding family strengths and a unified effort to blend support for a low-vision loved one.

#4 Friends: Support at Home and at School

In this breakout room, we will discuss the importance of friends of a low-vision family member and how these friends are so critical in support and encouragement at home, in the community, and at school.

BREAK

12:30 PM-1:00 PM - Guest Speaker - Wallace Stuckey

Wallace, who was diagnosed with retinopathy of prematurity (ROP) as a child, will share the strategies that he’s learned and the experiences that he’s had that have enabled him to thrive as a student who is legally blind. Wallace graduated from George Washington University in the spring of 2022 and now he serves as a website compliance accessibility analyst for the US House of Representatives. He tests the websites of Members of Congress to make sure that they are accessible to all constituents, including those with disabilities. He is also focusing on starting a graduate school program focused on foreign affairs. Ultimately, he hopes to join the US diplomatic corps by being accepted to the Department of State as a foreign service officer. Read his full bio here.

1:00 PM-1:30 PM - Closing Remarks, Dr. Capone

REGISTER HERE!

Join Lisa Lovasco as she talks about her experience as a parent navigating her daughter's FEVR diagnosis. She started with feelings of loneliness and despair then searched for community and hope through support groups and advocacy initiatives. There will be time for Q&A after the presentation.

Read her latest article on the PRRF website here.

Register for the workshop here.

The PRRF Family Advisory Committee invites you to join us on October 11th at 7:00 pm ET for a virtual workshop featuring high school senior Jennifer Z. Jennifer will share her story of life with retinopathy of prematurity (ROP) and her relationship with her sighted twin sister Ashley. There will be time for Q &A after the presentation.

Register for the workshop here.

Also, read Jennifer’s latest article on the PRRF website here.

Save the date for our 4th annual Hope for Vision Walk/Run! This year’s event will be in person at Stoney Creek Metropark. We will also have a virtual component to the event.

September 11, 2022

8:00 am ET Registration

9:00 am ET Walk/Run

10:00 am - Noon ET Festivities

THANK YOU TO OUR 2022 PLATINUM SPONSOR:

Join parent and Family Advisory Committee member Stephanie Brennell as she discusses sibling relationships - how they look different in every family and the importance of educating young children about disabilities and differences in others.

Read her latest article on the PRRF website here.

Register for the workshop here.

Join the PRRF Family Connection Conference on January 22, 2022, from 10:00 am - 1:00 pm ET. This conference is made possible by our generous PRRF Donors.

This year’s virtual conference focused on education for parents and caregivers will include research updates with the doctors, featured speakers, and breakout sessions.

We will send a link to the event and a conference workbook a few days beforehand.  Closed captioning and language translation options will be available. Click here to register and submit your questions for the doctors!

AGENDA

10:00 am -10:15 am             Welcome and Introductions

10:15 am -10:45 am             Research Update

10:45 am -11:15 am             Q&A with the Doctors

 BREAK

11:20 am - 12:00 pm            Break-out Sessions

                                                #1        Pre-K 

                                                #2        K-6

                                                #3        7-9

                                                #4        10-12

                                                #5        College

BREAK

12:05 pm -12:20 pm               Keynote Speaker, Brandon Werner

12:30 pm - 1:00 pm                Closing Remarks

Questions? Contact Luisa at lrecchia@pediatricrrf.org.

Join us for a virtual Q&A Featuring:

Dr. Michael Trese, Dr. Kim Drenser, and Dr. Tony Capone, Jr.

Questions can include topics such as:

• Research Updates

• Treatment Methods

• Resources Available

• New Initiatives

RSVP to info@pediatricrrf.org. A zoom link will be emailed prior to the event.