What Matters Now

Free Personal Websites for People Facing Illness

 

Illness and the dying process are among the most painful things that people experience. Furthermore, our culture’s tremendous fear of death keeps people from accessing the profound and fulfilling aspects available in these experiences.Many caregivers wish to give those they are caring for hope and peace; they want to ask them questions that help them reflect on the meaning in their lives and the people that they love. Patients, too, want this. Yet the pressures of illness and the dying process make it extremely difficult to raise these topics. As a result, sick and dying people often contemplate their lives in isolation and never find the full peace and healing that they could have.

Patients and caregivers need a vehicle that helps them reflect on what matters most with greater ease. While the internet has proven somewhat useful for this by helping people connect online, current internet spaces do not provide the full potential of service that they could.

What Matters Now fills this gap.

The Project

What Matters Now provides free private personal websites for people who are sick or dying to reflect on their lives, share their journey with loved ones, and coordinate support. It empowers patients and the people they love to experience illness and dying with self-awareness, authenticity, trust, and empathy — and frees them to have potentially the most profound time of their lives.

What Matters Now websites include:

  • An Updates section to share what’s happening
  • A Guest Book for friends and family to offer messages of love and support
  • Photo-sharing
  • “Lend a Hand” to help families communicate the support they need, including financial help
  • A Reflections section to help patients and caregivers broach big picture topics — including their life story and people to whom they would like to express forgiveness, love and gratitude — with greater ease and inspiration
  • Resources for illness and grieving, and
  • Donations for nonprofit hospices and hospitals caring for the patient

Alignment with the Submission Guidelines

  1. The four relationship skills:
    1. Self-awareness: Reflections section questions spark introspection and important conversations. The Updates and Guest Book sections encourage people to deeply share experiences. Collectively, these create greater self-awareness not only for the patient but for their entire community.
    2. Authenticity: A What Matters Now website honors both life and the illness experience. Its simplicity, elegance and intention promotes honest, heartfelt communication.
    3. Trust: Illness makes us vulnerable. What Matters Now sites increase authentic connection and amplify trust in relationships.
    4. Empathy: Shared experiences of illness and loss fuel empathy and inspire compassion.
  2. What Matters Now websites foster wellness during illness experiences. They educate people about illness and dying, how to be with loved ones, and how to use an illness experience for personal transformation.
  3. The websites encourage people to connect meaningfully with themselves and with one another. This helps people transform together.
  4. What Matters Now is a web app built with contemporary technologies and designed to scale. We have a budget of $40,000/month in donated AdWords spending through Google Grants Pro (the highest tier of support provided only to select nonprofits), which currently brings more than 30,000 visitors/month.
  5. What Matters Now websites are simple to set up and easy to use; they can be navigated by anyone with basic internet skills.

Differentiators

Email and Facebook

Neither email nor Facebook guides people to honor the experience of illness when coming together to support a loved one. As one user expressed, “I’ve been fighting lymphoma since 2009 and I wish I had found you sooner. I normally use Facebook but to be honest your site helps me record things that I haven’t been able to before and lets people read what I’ve been through.”

CaringBridge

CaringBridge provides personal websites for people experiencing a critical health event, and while we share essential values and features, it does not focus on helping people broach the big picture questions that illness and death provoke. What Matters Now websites are unique in:

  • structuring reflection by providing questions to spark important conversations
  • helping families communicate their financial needs
  • raising donations for nonprofit healthcare partners
  • sharing resources that encourage a mindful approach to illness and dying, including work by Susan Bauer-Wu, Frank Ostaseski and Jon Kabat-Zinn

Timeline

What Matters Now began as Hospice Journey in 2009. We recently rebranded as What Matters Now to be more inclusive of people at earlier phases of life-threatening illnesses and people with chronic illnesses. To complete the transition to What Matters Now, we must expand our marketing and outreach.

In 2012 and ongoing into 2013, we will:

  • Refine how we communicate to varied audiences, including caregivers, medical staff, and patients with specific illnesses
  • Develop a Facebook and Twitter presence
  • Begin blogging about resources for life-changing illness
  • Refine our AdWords campaigns to reflect our expanded scope
  • Expand our existing collaborations with local and national hospice organizations in the US and UK
  • Develop new relationships with hospital palliative care units and other organizations serving people with serious illnesses
  • Speak at relevant events, such as the California Hospice and Palliative Care Association’s annual conference, the National Hospice and Palliative Care Organization’s conference, and the national Compassion and Choices conference
  • Continue to improve the websites, e.g., expand the Resources section and possibly add the ability to upload video and audio messages

Budget & Proposed Use of Funding

Current costs (primarily hosting fees and some travel) are covered by donations from users and Amazon commissions. A Memory Books feature will provide additional future revenue. Ongoing product development and maintenance will continue through the volunteer labor of our team.

With 1440 Challenge funding, we will hire expert guidance to support us in publicizing What Matters Now.

Goal: Maximize benefit from our $480,000/year AdWords budget through an in-depth review and refinement of our AdWords account, plus AdWords and Analytics training for our team.
Expenditure: ~$10,000 for an AdWords consultant (possibly http://kristinacutura.com/about.html)

Goal: Establish a social media presence to engage with users and supporters and share helpful information about illness and dying
Expenditure: ~$6,000 for support in strategy, voice development, editorial calendar guidance, and tracking progress (possibly http://gobemore.com/services/)

Goal: Showcase What Matters Now to users and healthcare partners through compelling, professional videos
Expenditure: ~$3,000 for video production (company TBD)

Goal: Promote What Matters Now at national conferences
Expenditure: ~$3,000 to exhibit at the American Academy of Hospice and Palliative Medicine conference

Goal: Continue to cultivate skills in contemplative care for people who are ill and dying
Expenditure: $1050 for Metta Institute “Opening to Mystery” retreat (http://www.mettainstitute.org/EOLopeningtomystery.html)

The Team

Luisa Magarian, Technical Architect
Luisa is an expert web developer who has built software for startups, Google, Citrix, Dell, and Apple (where she currently works). Luisa also knows first-hand about living with serious illness; she’s recovering from a long-term back injury and spinal fusion surgery. Her What Matters Now hats include technical architecture and development and being a real user.

 

 

Vanessa Callison-Burch, Executive Director
Vanessa’s ten years experience in software engineering has covered all aspects of the software development life cycle. Her experience ranges from founding startups to leading data integration projects for JPMorgan Chase. She’s currently Senior Tools Developer for Citrix’s virtualization products. A Ju-Jitsu black belt, her leadership style fuses kindheartedness with relentless focus. Her What Matters Now hats include product management, outreach & collaboration, and operations. She has been a hospice volunteer since age 15.

Vanessa and Luisa met as undergraduates at Stanford in 1999. Together, they have funded micro-businesses for street children in Ethiopia, engineered startup web products, and studied meditation and mindfulness with a Buddhist monk, an experience which inspired the creation of What Matters Now.

What Matters Now is additionally supported by a committed network of technology professionals donating their time and expertise.

External Validation

  • 501©(3) nonprofit status
  • Recipient, Google Grants Pro. Google donates $40,000/month in an ongoing AdWords grant
  • Recipient, pro bono legal consultation from Manatt
  • Thousands of hours of donated work from software designers, developers and testers
  • Selected as faculty for conferences by the National Hospice and Palliative Care Organization and the California Hospice and Palliative Care Association
  • Over 1,800 websites created to date
  • National Hospice Foundation: “We think this is a really wonderful way to use the Internet to provide comfort and support at the end of life.”
  • Hospice of the Valley
  • Rebecca W., user: “Thank you so much for providing my husband with the opportunity to share his end of life journey with his loved ones. I believe the correspondence extended and enriched his life and will be with us always. It was truly extraordinary.”

We are inspired and excited to see the 1440 Foundation encouraging technology that strengthens relationships, and we would be thrilled to work with you. Thank you for your consideration.