Wednesday, May 6, 2015

New Care Package Items


Sisters by Heart is thrilled to announce the launch of two brand new care package items, the Book of Hope and the Single Ventricle Q&A booklet! Both of these new tools for HLHS families were unveiled this past weekend at the NPC-QIC Learning Session and will be included in our care packages beginning next week.

Book of Hope

In mid-December of last year, we reached out to our HLHS community, asking for submissions for a brand new Book of Hope; a book that would showcase the love and support of our community, as a beacon of hope for newly diagnosed families. Our community responded overwhelmingly, with over 50 submissions! After many hours reading the inspiring stories, editing, proofreading, planning and discussing, we're so proud and excited to say that the 1st edition of the HLHS Book of Hope is complete! We're so grateful for the team at Empowered by Kids for reaching out to Sisters by Heart, and for producing this incredible book for the HLHS community!

Not only will this book be included in our care packages, but Empowered by Kids will provide Books to every NPC-QIC care center to help meet their HLHS families' needs! What an incredible gift of HOPE for newly diagnosed families!

You can access the Book of Hope here!

Single Ventricle Q&A Booklet

5 pages of Q & A to prepare you in communicating with your child's care team

Sisters by Heart has been hard at work with NPC-QIC's Transparency Workgroup to develop a useful tool for expecting parents - a booklet parents can take with them to appointments, with a list of questions to ask and things to consider! We wanted a place for all of this information to be housed together in an easy format for our parents to use. Thus, the Single Ventricle Q&A Booklet was born! The Booklet includes several important questions to consider asking your child's care team, along with our ever popular hospital packing list, and a space for parents to write their own notes! We're especially excited at how helpful this tool will be for parents at smaller centers, or who aren't connected to the heart community already, who don't know what questions they should be asking. What we wouldn't have given for such a useful tool as newly diagnosed parents!

The Single Ventricle Q&A booklet will be included in all care packages moving forward. Both Sisters by Heart and NPC are thrilled to empower parents and foster relationships between parents and providers! 

Families who don't have access to our care packages will be able to view and print the HLHS Book of Hope (via Empowered by Kids) and the Single Ventricle Q&A (via the Research/PDF section on our new site)! You can download your own copy here.

Stay tuned for more news on Sisters by Heart care packages - we have a lot of exciting additions on the horizon!


Previous Blog Posts

Tuesday April 21st, 2017: Parent Scholarships NPC-QIC 2017

Monday, August 8, 2016: On Finding His Tribe

Thursday, November 19, 2015: You're the General Manager

Monday, July 20, 2015: Fontan Care Package Launch

Monday, June 8, 2015: SBH Supports Full Transparency in Outcomes Data

Wednesday, May 6, 2015: New Care Package Items

Wednesday, April 29, 2015: A Tea Just for You: Heart Mom Comfort Tea!

Monday, March 2, 2015: Parent Travel Scholarships - NPC-QIC 2015 Spring Learning Session!

Tuesday, February 17, 2015: NPC-QIC/SBH Response to HLHS Statistics Shared by the CDC

Monday, February 2, 2015: Fundraising with Heart: Tink & Key

Thursday, January 29, 2015: January 2015 NPC-QIC Action Period Call Update

Wednesday, January 28, 2015: Fundraising with Heart: The Baby Blue Sound Collective

Thursday, December 18, 2014: Sharing HOPE: An exciting opportunity

Tuesday, September 30, 2014: HLHS Collaborative: September's Action Period Call

Tuesday, August 26, 2014: Parent Travel Scholarships - NPC-QIC 2014 Fall Learning Session!

Monday, August 18, 2014: CHD Kids and School Special Services

Monday, August 11, 2014: Using Crisis to Create: The Asher James Foundation

Wednesday, July 2, 2014: HLHS Collaborative: June's Action Period Call

Monday, June 23, 2014: Pink for Paul!

Friday, June 13, 2014: Why There are No "Brothers by Heart"

Tuesday, May 13, 2014: What If...

Wednesday, April 2, 2014: HLHS Collaborative: March's Action Period Call

Wednesday, March 5, 2014: HLHS Collaborative: February's Action Period Call

Saturday, February 15, 2014: Shopping for a Cause

Thursday, February 6, 2014: HLHS Collaborative: January's Action Period Call

Friday, January 17, 2014: Research Opportunity: Prenatally Diagnosed Moms Need Apply!

Monday, January 6, 2014: HLHS Collaborative: December's Action Call

Friday, December 27, 2013: Dual Perspectives: Growing Up with HLHS

Wednesday, December 4, 2013: Take Action: Be Part of the Solution

Tuesday, December 3, 2013: Join Millions for #GivingTuesday

Monday, November 18, 2013: A Mother's Perspective: The Other Sibling

Wednesday, November 6, 2013: A Unique Opportunity with What to Expect

Tuesday, November 5, 2013: Time to Vote!

Friday, November 1, 2013: 2nd Annual Sisters by Heart Avon Fundraiser

Thursday, September 12, 2013: Possibilities: Cord Blood Banking

Tuesday, September 3, 2013: A Unique Partnership

Tuesday, August 6, 2013: Fontan Series: Kylan's Story

Monday, July 22, 2013: Fontan Series: Lily's Story

Monday, July 15, 2013: Fontan Series: Aly's Story

Monday, May 13, 2013: A Heartfelt Donation: Medical Masks in Anya's Memory

Monday, April 22, 2013: Parent's Perspective: What to Pack for the Hospital

Thursday, April 18, 2013: Getting a 2nd Opinion: An Inpatient Perspective

Monday, April 15, 2013: Getting a 2nd Opinion: An Outpatient Perspective

Saturday, February 9, 2013: It's February, Celebrate Black History Month!

Monday, February 4, 2013: A Heartfelt Donation: eBay Foundation

Friday, February 1, 2013: A Unique Collaboration: SBH and the NPC-QIC

Monday, January 28, 2013: NPC-QIC Winter Learning Session

Friday, December 21, 2012: A Mothers Perspective: Feeding issues

Wednesday, December 5, 2012: A Heartfelt Donation: Smart Mom Jewelry

Sunday, November 18, 2012: Heartfelt Donations: aden + anais and The Dorsett Family

Tuesday, November 13, 2012: Gifts from the Heart: Stella & Dot

Monday, November 5, 2012: Creative Donors: United Way Workplace Campaigns

Sunday, November 4, 2012: A Mother's Perspective: Healing a Hurting Marriage

Sunday, October 28, 2013: A Heartfelt Donation: Avon

Saturday, October 27, 2012: A Gift for Our Fighters

Monday, October 15, 2012: Stories of Hope: Tyler Sajdak

Monday, October 8, 2012: A Heartfelt Donation: The Mended Heart

Monday, September 24, 2012: Fun in the Sun: Year Two

Sunday, September 16, 2012: Creative Moms: Warrior Scrapbooking

September 11th, 2012: Remembering Our Heroes

June 6th, 2012: Top Ten Discharge List