SASHA BELLA FUND FOR FAMILY CENTRED CARE

The Sasha Bella Fund For Family Centred Care is a family fund at Sickkids Foundation setup by Sasha's parents Pamela Stein and Jonathan Blumberg in June 2006. The fund celebrate Sasha's life and gives back by supporting hospital and specific unit initiatives that strengthen family-centred inter-professional practise and culture at SickKids hospital.

Sickkids' mission as stated on its website is "...to provide the best in family-centred, compassionate care, to lead in scientific and clinical advancement, and to prepare the next generation of leaders in child health." Family centred care recognizes family diversity, ways of coping, expertise, that the family is a constant in the child's life and a partner in care. Along with entitlement to complete, unbiased and timely information, effective family and staff partnership and collaboration increases patient and parent confidence and thus their ability to care for themselves and their children. Family centred care requires effective communication between staff interprofessionally and the combination of strong family-centred and interprofessional care improves patient safety, care outcomes and family satisfaction.

In support of this vision of patients and parents as partners in care, The Sasha Bella Fund has raised over $110,000 and consulted with doctors, nurses, allied professionals as well as Sickkids parents we have met. Due to an incredible generosity to Toronto's world class pediatric hospital, The Sasha Bell Fund has delivered approximately $68,000.00 to carefully selected programs, has helped create new family-centred initiatives and assisted hospital educational programs. Here are pictures of our November 2009 Fun Day fundraiser and the 2008 Sasha Bella Walk.

Sasha Bella Fund For Family-Centred Care donations at Sickkids Hospital

1. $2,000.00 for the first two recipients of the Sasha Bella Award for Excellence in Family-Centred Care – Labatt Heart Centre, Nursing Week, March 2007
2. $175.00 purchase of stroller for Heart Centre because Sasha loved her strolls within the hospital
3. $1,000.00 grant to Palliative Care to fund a parent reading kit
4. $5,000.00 to sponsor SickKids first Inter-Professional Practice Education Week, November 2007 Read more
5. $3,000.00 for a mural to give the 6A Beanstalk Occupational and Physical Therapy program a home in the Labatt Family Heart Centre
6. Pamela and Jonathan spoke at a Palliative Care workshop for doctors in the Cardiac Critical Care Unit about talking directly with families about dying and death
7. $5,000.00 toward expanded Palliative Care therapeutic art, music and clown program - read Sickkids Palliative Care activity report 2006-2007
8. Participant at the Labatt Family Heart Centre retreat, December 2007 Read more
9. 45 minute presentations on strategies for working with parents for Heart Centre interprofessional practise education days, Jan-March 2008
10. Participant at the Interprofessional Practise retreat, February 2008 focused on the Interprofessional and Family Centred Care documentaries and the Family Advisory Committee Review 2007 Read More
11. At the request of parents, arranged an NICU - parent family centred care brainstorm, February 26, 2008 that brought together 12 staff and 4 parents and a submission by another NICU family
12. 15 minute presentation to A Best Practise Spotlight session entitled Principles and Practises of Collaborative Communication, March 2008
13. Catalyst and $5000.00 support for the new Child Life "Sing! Move! Play!" Child-Parent Music Group with Treasa Levasseur (who has donated her energy for one year)
14. Interview for Sickkids educational documentary to promote Interprofessional Practise and Family Centred Care at Sickkids Hospital
15. $5,000.00 to support the new family care committee in the NICU (intended for parent stipends, family-centred books, web tools, social work writeup of the advisory committee etc)
16. Brainstorm with Sickkids Palliative Care about family fund support for the Palliative Care Service, April 2008
17. Participated at Mount Sinai NICU Parent-Buddy Training with Sickkids social worker Laurie DeOliveira to learn about application at Sickkids, April 27, 2008 Read More
18. $2,500.00 support for Sickkids 4rth Annual Partners in Pediatric Patient Safety Symposium for 10 bursaries, parent speaker and prize for best family centred patient safety articleRead more
19. $2,000.00 for the second two recipients of the Sasha Bella Award for Excellence in Family-Centred Care – Labatt Heart Centre, Nursing Week, March 2008
20. 2nd Sasha Bella Fund walk raises $60,000 for Sickkids Foundation with the generosity of 500 donors / sponsors, June 2008
21. Request to add mural signs to new Palliative Care offices in the basement (which people get lost trying to find) was turned down for now
22. $1,000.00 to the preemie picture program in NICU where social workers take a picture of each baby for Mom and Dad who may be separated from baby, September 2008
23. Launched editable Team for Research with Adolescents and Children in Palliation and Grief website that links researchers, families, policymakers and clinicians, October 2008
24. $5,000.00 to palliative research innovation fund, matched by Sickkids, lead to two studies on parent experiences awarded $6000.00, November 2008
25. $2,000.00 to Interprofessional Excellence Award that recognizes an outstanding Sickkids team with books and a group trip to a nearby spa for 'care for the care giver'
26. Presentation on parent perspective on Interprofessional Practise at a palliative workshop, Nov 2008
27. Jonathan Blumberg, Sasha's dad, volunteers on Family Centered Care Advisory Council (FCCAC)
28. $3,500.00 first Interprofessional Practise Award - presented at IPP symposium to Genetics & Metabolics Team, Nov 2008
29. $3,000.00 for Nursing Excellence Awards -2 individual nurse awards, 1 team award, May 2009
30. $2,500.00 to Partners in Patient Safety 5th Annual Pediatric Patient Safety Symposium for family partnership prize, June 11, 2009
31. $10,000.00 to Family Centred Care Advisory Council, June 2009
32. $5000.00 for SickKids inaugural Paediatric Palliative Care Research symposium, October 2009
33. $10,000.00 for The Innovation Fund in Palliative Care research, October 2009
34. $2,500.00 for Rehab toys and tools, December 2009

Support for activities ongoing

1. the "My Child's Day" ICU family binder (can be more than a plastic 3 ring binder)
2. writeup of challenging care passages with families and staff
3. NICU parent booklet of rhymes inspired by Dan Yashinsky's 'Talking You In'

Related Activities

1. Interviews for National Film Board of Canada documentary Grief Walker on the palliative interventions of Stephen Jenkinson, summer and winter 2007
2. Brainstorm with Ability Online as they prepare to redevelop their patient, family bulletin board, summer 2008
3. Presentation to the Toronto Central Palliative Care Network, Mt Sinai Hospital, May 2009
4. Presentation to the Toronto Central Palliative Care Network State of The Union Plenary, Mt Sinai Hospital, May 2009

We are grateful the fund resonates with parents like Jonathan's mom Janis who wrote on their blog:

"After much research and exploration and talking with people at the Sick Kids Foundation we have found the Fund that I think addresses the same goals and priorities that Diane and I have for helping to affect change at SickKids. It's called the Sasha Bella Fund and it's named after a beautiful little girl named Sasha Bella Stein-Blumberg. Her parents set up the Fund after she passed away in June 2006. They do great work, particularly in encouraging family-centred care in the intensive units of Sick Kids, encouraging family centred practice on the general units, advancing palliative care and support for parents and promoting interprofessional education. It's a fund and a cause we are proud to support and we encourage everyone to take a closer look."