Committed to a Cause: 5 Women Who Are Making a Difference

Advice on fundraising: Don’t be afraid to ask — or get turned down. “My experience is that people give money because they want to, not because they have to.”

Keep it personal. Tell your own story, if you have one. If you don’t, think about someone in your life who does have a personal connection to a cause, and share the story of your relationship.

How you can help: Register for the "Light the Night Walk" in Manhattan, scheduled for Sept. 25, or sign up for an event near you. Donate to LLS or become a volunteer.

Her cause: HIV/AIDS

Who inspires her to give: The LGBT community and the people she knows who are affected by the disease

How she’s making a difference: This past June, Hardy biked 545 miles from San Francisco to Los Angeles in the annual AIDS/LifeCycle ride, averaging about 80 miles a day for 7 days. The music therapist from Palo Alto, California, raised $4,373, while the ride hit a new fundraising record of $14.2 million. Together, Hardy and her husband trained for six months and even biked together during the race, alongside 2,201 other riders. They’re planning to do it again in 2014. “Going into the ride, I didn’t expect to want to do it twice,” says Hardy. “There’s no way I can’t do it again.”

Uplifting moment: A large contingent of riders living with HIV participated in the race. “I met people who have been affected by HIV/AIDS or have it, and it was inspiring to see that they are pushing through barriers and doing more than they thought they could do,” she says.

Hardest challenge: Staying committed to training was hard. “I didn’t always want to get up and do a 70-mile bike ride. It wasn’t my idea of a relaxing weekend,” she says. “It was helpful to have my husband [training with me] and to remember why we were doing it.”

Advice on getting involved: Start small and work your way up to a bigger goal, whether or not it’s fitness-related. (Hardy biked 100 miles in 2012 as part of the Livestrong Challenge, in Davis, California.) If you are looking for a fitness goal, sign up for a 5K or a short bike race to motivate you. Or, search for opportunities in your community to make a donation or volunteer your time.

How you can help: Zip down the California coast and register for the AIDS/LifeCycle ride. If you’re not into cycling, consider volunteering as a roadie and help set up rest stops along the route.

Her cause: Pitt Hopkins Syndrome (PHS), a rare disease characterized by intellectual disability and developmental delay that affects an estimated 250 people worldwide

Who inspires her to give: Her 7-year-old son, Victor, who was diagnosed with PHS at age 2

How she’s making a difference: In 2010, Pauca, a former special ed teacher, and her husband joined forces with two other families to raise money to support PHS research. Two years later, Pauca co-founded the Pitt Hopkins Research Foundation (PHRF) with Audrey Davidow Lapidus whose son, Calvin, also has PHS. The foundation has raised $487,348 (including $30,000 the Paucas helped raise before the organization was founded) and given $364,000 in grants. Recently awarded grants are helping scientists at Harvard University and the University of Alabama at Birmingham research medical treatments for PHS, none of which currently exist.

The Paucas also started an international support group that has connected nearly 300 people from across the US and Europe and as far as Japan and New Zealand. This year, PHRF is celebrating the first International Pitt Hopkins Day on Sept. 18; the date was chosen because PHS is caused by the mutation or deletion of the 18^th chromosome. PHRF will also host its first conference, bringing together mothers of children with PHS, in November in the Pauca’s hometown, Winston-Salem, NC.

Her mantra: “I decided a long time ago I could be bitter or better, and I choose to be better.”

Advice on awarding grants: If you aren’t ready to create a 501(c)(3) organization (the official non-profit entity), but want to raise money, consider opening a donor-advised fund at a community foundation. The community fund can financially administer grants on your behalf.

Once you’re ready to start a nonprofit organization, ask around to see if any lawyers will help file your non-profit status. A local law firm took on PHRF as a pro bono client, saving the foundation about $15,000 in fees.

How you can help: Donate to the Pitt Hopkins Research Foundation. Because PTRF is run by volunteers and has zero overhead costs, all donations go directly toward grants. Research could also benefit other neurodegenerative diseases, such as autism.

Her cause: Hydrocephalus, a condition marked by excessive fluid in the brain that affects one in 300 people

Who inspires her to give: Her 6-year-old son, Max, who acquired hydrocephalus around the time he was born

How she’s making a difference: Pellettieri (Good Housekeeping’s Entertainment Director) is co-chairing the first Hydrocephalus Association 5K walk in Los Angeles, her hometown, which will take place on Sept. 29. Alison Sweeney will make an appearance at the family-friendly event that includes face painting, a hockey rink, and a DJ.

Fun philosophy: There’s a fear of the unknown with hydrocephalus — some stories can be hard to hear. That’s why Pellettieri is focusing on the positive. “I love the idea of bringing together all these people who are connected to hydrocephalus. It’s more like a festival than a walk,” she says. “By putting together a walk, helping raise awareness, and raising money for research, I can feel less helpless and feel like I’m making a difference.”

Hardest challenge: Without an existing database of families in the LA area, outreach has been a big hurdle. The best way to get in touch with them is through neurosurgeons, but relying on hospitals is not always easy due to privacy issues. And though Max’s neurosurgeon let Pellettieri post flyers in his office, it’s not guaranteed that community members will see it. “Some years we see the doctor maybe once a year,” she explains.

Advice on planning an event: Don’t shy away from volunteering just because you’re short on time. Reach out to leaders and be specific about your strengths and your available time commitment. You may be tasked with one seemingly small assignment, like finding a location for a kickoff party, which may actually have a bigger impact than you think.

When organizing an event, ask for assistance and accept any you can get. “Take advantage of people who want to help out or they will get bored and find something else,” she says.

How you can help: Participate in the LA walk (you can be a virtual walker) or donate to Team Max.

Her cause: Food allergies, which affects 15 million Americans including those at risk of life-threatening anaphylaxis

Who inspires her to give: Her 8-year-old son, Tommy, who is allergic to peanuts, eggs, tree nuts, shellfish, and lentils, among other foods

How she’s making a difference: Every year when Alter plans birthday parties for Tommy and his twin sister Cate, she asks that, in lieu giving presents, friends make a donation. The family, who lives in Highland Park, Illinois, has been doing this since the twins’ 4^th birthday. For their most recent party, Alter asked guests to make a small monetary donation to the Food Allergy Research and Education organization (FARE). She and her husband matched the donation for a total gift of $900. Before each celebration, the Alter family discusses which organization will benefit from their donation, and now that the kids are old enough, they get to choose. “We talk about getting lots of things from relatives, and there are some friends always give gifts,” says Alter. “That’s plenty. Let’s take this stuff and give back to communities that are important to us.”

Other birthdays have called for coloring books or games that were donated to local hospitals and doctors’ offices where Tommy and Cate had undergone testing for food allergy studies. The activities were intended to help patients pass the time during 4-hour appointments. “I think that raises awareness with friends’ parents and with kids as well,” she adds.

Biggest reward: Alter imagines the comfort and distraction kids will get from the items her family has donated. She likes “knowing that people who need some joy are getting it.”

Her advice on giving back: Find opportunities that are linked with your personal experiences. “We were driven to give back to medical institutions because they took such good care of us.”

Weigh your options. Consider if you’re more interested in education or advocacy, and whether you want get involved at the organizational level.

How you can help: Visit FARE’s website to make a contribution, start a support group, become an advocate, or learn more about clinical trials.