BY COURAGEOUS PARENTS NETWORK

Happy New Year to our Courageous Parents Network community. I hope that the December holidays and end-of-year featured peaceful moments with those you love who make you happy. I spent the last week of the year being pretty quiet, spending as much time as I could on the sofa, reading and reflecting about the year we’ve had in 2016 and the year we will work to have with you in 2017.

2016 was an exciting year of growth and solidification for Courageous Parents Network. We:

• Launched our private discussion forum so parents can connect directly with each other.
• Captured and shared new parent stories as videos, blogs, and podcasts so parents can hear and learn from each other. See below for the top 5 Videos and the Top 3 Blog posts of the year.
• Shared Courageous Parents Network in person with 500 medical providers at Pediatric Rounds in hospitals up and down New England. Because providers are the #1 way parents are learning about the Network.
• Reached 13,500 parents of seriously ill children and their medical providers through our Web site and social media. There are approximately 400,000 parents out there to connect with and learn from so we’ve got a lot of outreach to do! You can help by sharing with your own network.
• Had our best fundraising year yet to help us do all we have planned for the year ahead. Thank you to the hundreds of individual donors who stepped up to make this possible!!!!!

Which brings me to our plans for the year ahead and how we intend to bring you—the Network— the guidance, perspective and validation you seek.

First and foremost, we are going to re-listen to all of our parent and provider stories and offer you their wisdom and gems in new ways. I am struck by how every time I listen to a podcast or watch a video, I hear something I haven’t heard before.

Of course, we will also capture and produce new stories from additional courageous families and the dedicated providers who care for their children. Our intention is to feature families affected by other rare diseases and topics that you, our audience, tell us you are looking for.

Lastly, we will be reaching out to you, our audience, to ask you how you are using Courageous Parents Network, how it is helping you, and what we can do better. I invite you to respond.

From everybody on the Courageous Parents Network team, I extend our deepest gratitude to you. Time is one of the most precious commodities and we care deeply that every moment you spend with us in 2017 is time well-spent for you and ultimately for your family.

May 2017 bring you the people, resources, love and kindnesses to sustain you and your family.

Hugs,

Blyth, Executive Director

TOP 5 VIDEOS

#1 Jessica, on being Rachel’s Big Sister

The experience of what it’s like for the healthy siblings is a really big deal both for the parents and the medical providers who think about the well-being of the entire family. To hear 18-year old Jessica is to be given a rare glimpse into how brothers and sisters love and cherish and learn from their medically-fragile siblings.

#2 Dr. Joanne Wolfe presents on Pediatric Palliative Care as a Social Issue

Unfortunately but not surprisingly, our country’s policy makers and top philanthropists are not focused on the needs and experiences of families of children with serious illness. But we’re working to change that by promoting the value of pediatric palliative care and showing the tremendously positive impact it has, and by collaborating with the leading palliative care doctors in the country, one of whom is Dr. Wolfe.

#3 Two SMA Type 1 Families. Two Paths.

Caring for a child with serious, life-threatening illness involves many difficult decisions for parents, including those involving medical interventions. Perhaps no decision is more weighty than whether to select a tracheostomy for the child. Here, two sets of parents make different decisions.

#4 When the time comes: The last hour of Talon’s life.

Courageous parents, Kristina and Chad, describe the moments leading up to and then following their son Talon’s death.

#5 I wish there had been more support and fewer decisions at the beginning.

Courageous parents, Heidi and Greg, talk about how pressed and rushed they felt after their daughter Abby’s diagnosis– to make decisions, adapt to highly medical matters, and mourn the life their child was not going to have.

TOP BLOG POSTS

#1 “How are you doing?”

Genny, courageous mom of June, writes poignantly about the shift that happened for her when she accepted that June was dying.

#2 “My Sister and My Mom”

Another sibling, Eliza, age 15, reflects on the big sister she never knew. Cameron died at age 2 when Eliza was 10-weeks old. Cameron’s life was the seed for Courageous Parents Network.

#3 “I will never stop fighting”

Courageous mom Barb is boldly and beautifully honest about the relentless and exhausting determination required to care for her medically fragile son Jake, now 21.