Aimee's Bulletin

Over the course of the past couple of weeks I have come to know two wonderful women - Abigail Sandler and Sue Hoag Badeau. These two women have worked tirelessly on a much needed piece of Pennsylvania legislation called Aimee's Bulletin.

Abby's sister, Aimee, was profoundly developmentally and physically disabled. As a result of horrific, detailed circumstances that surrounded Aimee's Group Home care, Abby with others formed Aimee's Team. For the past four years she has worked towards enhancing the end-of-life decision making process for special needs individuals in Pennsylvania. She refers to the document as Aimee's Bulletin, and it will effect literally thousands of special needs individuals, state-wide. This Bulletin provides a clear policy, with guidance and steps that are morally, medically and legally sound to ensure that end-of-life care can reflect the needs, desires, values and beliefs of the individual and their family members. Harrisburg has promised that the Bulletin will be signed by January 15, 2011.

Wayne Badeau is one of the youngest of Hector and Sue Badeau's 22 children, adopted from all over the world with a variety of life circumstances and challenges. Wayne, one of three terminally ill children adopted by the Badeaus, is delightful and charming with a beautiful smile and engaging spirit. He is also dying. Wayne has a rare terminal illness called San Felipo Syndrome, and while he has already out-lived the medically-expected life-span for this disease, he has definitely declined and it won't be long before he is facing his final days. The Badeaus have already experienced the deaths of their sons Adam (11 years ago this week) and Dylan ( just 3 months ago) and they know how deeply moving, and at the same time painful, it is to experience the death of a child. Wayne is much beloved and adored by his parents, all his siblings and others and we all hope and pray that his final days, when they do begin, will be spent surrounded by family with hugs, love and peace. Yet, because of what they experienced near the end of their son Dylan's life just this past September, they are fearful this may not be the case.

Aimee's Bulletin must be signed. Abby and Sue are working to ensure that it will be signed and Sue and her husband Hector are waiting for the go ahead to take their son Wayne to Harrisburg for the signing.

For more information see: http://badeaufamily.webs.com/

The Need For Philanthropic Advice

New Philanthropy Capital (NPC) and Global Partnership presented the results of a philanthropy survey sent to over 600 single and multi-family offices in the UK between March and May 2010. The results offer insight into the philanthropic nature of some of the UK's wealthiest families. The report titled: Family Philanthropy: rewards and challenges, dives into the philanthropic behavior of high net worth individuals revealing that while the vast majority of such clients like to actively plan their charitable giving there is a clear lack of service providers able to give the full range of advice they require. Wealth management firms largely do not have some provision in place to assist in this planning and are neglecting an important area in clients’ eyes. Fundamental to this planning process is deciding which causes to support and which charities are making an impact. Philanthropists are finding it hard to access the information they need to make informed choices and would welcome input from their advisors.

NPC summarizes the reports key findings as follows:

- Giving back to the community and addressing needs are major motivations for family giving, rather than public recognition.
- Most families have had positive experiences of giving, but highlighted some unfavorable aspects including 'tortuous administration' and fear of being 'actively pursued by charities'.
- 85% of respondents with children under 21 involve them in their giving.
- The main criteria for selecting charities are the charity's vision and strategy and whether it is focused on the greatest need.
- Finding information about charities is a challenge, particularly around the measurement of results.
- Nearly 60% of families would find philanthropy advice useful.

There is a growing need for specialized philanthropic advisors offering services to support wealth managers and family offices. Even though this specific report is UK-based, there have been other similar studies in the US. Howard J. Stock wrote an article titled "Clients Lack Charitable Giving Advice" in October of this year. In it he noted a survey which said that only 52% of advisors are proactively reaching out to clients about their charitable gifting. Of the 48% who are not, 31% said it is because they lack expertise to offer guidance.

This is certainly an untapped opportunity for advisors to strengthen client relationships and grow their practices.

"It is important for women to inform themselves."

Wangari Maathai founded the Green Belt Movement in Kenya to encourage rural women and farmers to plant trees to protect the environment and promote sustainable development. Maathai won a Nobel Peace Prize in 2004 for her efforts. She speaks of the conditions which led her native Kenya into environment degradation and the impact on women. When farmers plant cash crops they remove vegetation resulting in soil erosion. The soil is carried away to the river and there is no clean water. Women bear the brunt because they are responsible for getting the water for their families.

On the surface Green Belt Movement is about providing incentives to farmers to plant trees and educating them on managing their resources. At a deeper level it is about encouraging women to inform themselves on the impact of bad or lacking government policies.

More information can be found at www.greenbeltmovement.org.

Night Out With Meaning: Women & Giving

I just hosted the first Night Out With Meaning: Women & Giving on November 11th. Thirty-four women witnessed Peggy Dolan tell her story. Through family pictures, Peggy told the story of her family and their experiences caring for two of their daughters, Kelly Anne and Kim, as they battled aplastic anemia and a rare form of leukemia. Peggy and her husband Joe turned their tragedy into providing help and hope for families with seriously ill children through the Kelly Anne Dolan Memorial Fund.

Night Out is about learning, connecting and reflecting. It is my hope that attendees take away knowledge that they did not have before about the experiences of families in crisis. It is my hope that attendees will meet someone new or discover something about a friend that brings them closer. And it is also my hope that there are pieces from Peggy Dolan’s story that make attendees stop and reflect about their own lives and experiences.

At the beginning of the year, I decided to take a step back from what I was doing to figure out where I wanted to go professionally and as a mom. I started a journey that began with talking to people. With each conversation, which really was an exchange of stories, I was inspired. And from those conversations, I gained clarity about what would bring meaning to my professional life. The thing I thought would be really fun was working with women in my community around some aspect of charitable giving. I want to inspire women to take the time to think about their personal giving and I want to encourage women to align their passions with their gifts – both financial and non-financial. Then came the internal question - how exactly am I going to do this? I thought about what has given me great satisfaction and inspiration recently and I kept coming back to my meetings with people and hearing their stories.

And so Night Out With Meaning was created. It is pretty simple really, let’s enjoy elements of a typical Girls Nights Out – food, wine and friends – where women can feel comfortable and welcomed. Let’s pick a topic of interest to focus on like understanding the needs of families in crisis or why empowering women is so important to alleviating poverty. And let’s have one inspiring woman stand before us to simply tell her story. Stories, told well, have the power to transport us. Storytelling encourages exploration. It is a nurturing way to remind us that our spoken words are powerful, that listening is important, and that clear communication between people is an art. I am committed to inviting storytellers with different backgrounds and approaches to their chosen issue. I am also committed to helping make connections.

I witnessed women exchanging information, comforting each other, and creating an environment to allow those at the table to speak openly and personally.

My mission is to inspire others by helping them articulate their values and passions to be purposeful givers. Informed philanthropy can bring great satisfaction to a person’s life and has the power to transform communities, organizations and people.

I look forward to sharing future Nights Out with such creative, sensitive and inquisitive women!

Chasing Miracles

Last night I had the opportunity to watch the movie Extraordinary Measures and meet John Crowley, activist and entrepreneur. Extraordinary Measures is the story of the Crowley family and their quest to find a treatment and ultimately a cure for a rare genetic disorder known as Pompe disease. Two of John and Aileen Crowley's children have this disease. Their names are Megan and Patrick. In 1998 there was no treatment for this often fatal neuromuscular disorder. John Crowley started his own biotech firm over an 18 month period and sold it to Genzyme, one of the world's largest biotech companies. After the efforts of hundreds of people they finally discovered and produced a medicine to treat Pompe disease.

Following viewing the movie, Crowley made a few remarks and took questions from the audience. He answered the questions he always gets asked. First, how did the movie come to be? And second, how are Megan and Patrick doing? In 2003, the Wall Street Journal published an article written by Geeta Anandon on its front page about the Crowleys. Harrison Ford read the article, was struck by it and contacted producers to get the wheels in motion to make a movie. Crowley's message: If you are written about in the Wall Street Journal and Harrison Ford calls, do not hang up! Megan and Patrick are both doing well. They are still confined to wheelchairs and ventilator dependent, but they are thriving 8th and 7th graders. They receive the enzyme treatment once every two weeks. Thankfully this can be administered at home otherwise the children would have to spend a full day in the hospital and be exposed to germs that could compromise their respiratory systems. Crowley says that this is the biggest risk the children face. He continues to work on treatments - better enzymes to combat the sugar in their bodies which debilitate muscles and organs.

The Crowleys have written a book called Chasing Miracles. It is divided into 3 parts: Strength, Hope, and Joy. The book intimately chronicles the journey of the Crowley family and profiles all those who have helped along the way. If you are interested in learning more about this family, they have a website - www.crowleyfamily5.com. If you are interested in supporting charities which address the needs of families with rare, orphan diseases, the Crowleys include 4 links to charities on their website: The United Pompe Foundation, The Make A Wish Foundation, The Muscular Dystrophy Association, and Children's r.a.r.e. Disease Network.

John and Aileen Crowley did whatever it took to help their children survive. This is an inspiring story. It is about learning to ask for help, about not losing faith, about coping with challenges, and about the kindness of others. Stories like this one inspire, energize, and encourage self-reflection. I was honored to hear pieces of this story directly from John Crowley. The movie and book have really given him the opportunity to spread his message. It is a powerful one.

Fresh from 3-Day

Philanthropic journeys come in different forms. I participated in the Susan G. Komen 3-Day For The Cure in Philadelphia this past weekend. It was a journey of 60 miles through the streets of the city and surrounding neighborhoods. Over 2200 walkers and volunteer crew accompanied me on this journey.

FUCK CANCER! Save 2nd Base! Cancer Sucks! Save a Life, Grope your Wife! were the sentiments of the weekend. Never before have I seen so many boob, breast, ta ta references! Women and men of all ages came to walk together with hope, with remembrance and with joy for the people loved impacted by breast cancer.

As much as it is a fundraiser (and fundraise they did with Philadelphia bringing in $5.7 million), the event also raises awareness. Outrageous outfits, a sea of pink and plenty of cheering are what you witness when Komen 3-Day takes to the streets.

The volunteers are wonderful. They were out there everyday clapping, directing traffic, smiling, cracking jokes and motivating the walkers. Such kind hearts extended with the words, "thank you for doing what you're doing."

There was an older gentlemen who came to every cheering station everyday. He stuck his hand out for a high five and looked each walker in the eye saying "thank you so much for doing this." It was so heartfelt. He was there at the end with the same blue sad eyes and the same sentiment as we completed 60 miles.

There was a young woman two months away from her cancer treatment. Her hair was starting to grow back and with a wonderful smile she spoke hopefully about the prospect of getting her life back despite a Stage 3 diagnosis.

While a cure has not been found, the simple fact that a woman can be hopeful is something. We are far from over with this fight. Each 3-Day has a Remembrance Tent. The tent includes pictures of previous participants who have lost their fights. It also includes an empty white tent for people to write on with their deep thoughts on breast cancer and intimate messages to those loved ones lost.

It is not often that you get to take time out from everyday lives to focus on an issue that is important to you. I am thankful for the opportunity to experience this journey. Thank you to my supporters and thank you to my husband for taking such good care of our children.

I'll leave with this: high five! woo! hooray!

Kiva

Kiva is a nonprofit I have long admired. Started by Michael Flannery, Kiva's mission is to connect people, through lending, for the sake of alleviating poverty. Kiva allows donors to make online loans to entrepreneurs in developing countries through their website - Kiva.org.

They are looking to leverage their structure - technology, donors, relationships - to address other social problems. The idea is that their approach can be applied in other ways. The organization has taken its first step to expand its offerings by adding student loans.

Calling this approach education microcredit, Kiva is utilizing its resources and is figuring out ways to capture information on what works in this space. They are not alone. Last year a Seattle-based nonprofit called Vittana set-up a website to enable donors to make small loans to students in emerging countries. They have seen consistent growth in the number of loans month to month.

I think this continues to support the notion that people are interested in different approaches to philanthropy. There is increased interest in learning about social investments and microcredit. I think what will be fascinating to watch is how much these approaches become normal, longstanding commitments in people's individual philanthropic portfolios. If these organizations can continue to innovate and to measure the results, no doubt more donors will be drawn.