Raising Awareness and Fundraising

When Jaime Nolan lost her premature baby, Grace Ann, she was determined not to let the meaning of her life end there.

Born at 27 weeks after Jaime’s sudden onset of severe preeclampsia, Grace only survived eight days while her mother fought for her life in the intensive care unit. When Grace went into cardiac arrest, Joe Nolan watched the doctor standing over his daughter’s incubator, performing chest compressions with his thumb.
Jaime discovered the Preeclampsia Foundation online and found a network of support that helped her work through her grief. Determined to take action and help prevent others from enduring such a painful loss, she found out the Foundation needed to develop an annual fundraiser.

Jaime gathered a local group of volunteers and chaired what she thought would be a one-time gala in Minneapolis. At the same time she was helping with the first national walk-a-thon, which was expected to become the Foundation’s annual fundraiser.

The Saving Grace gala was held in November 2005 and the moving event raised more than $57,000. The Nolans were asked if the Foundation could make the gala an annual event and they were honored that Saving Grace— A Night of Hope has since become the signature event.

Each year Saving Grace rotates among major cities in North America, increasing national awareness of the disorder and taking advantage of the unique relationships and synergy of each city, said Eleni Tsigas, Executive Director of the Preeclampsia Foundation. She served as chair of the 2008 gala in Washington, D.C., which was selected to coincide with the annual meeting of the World Congress of the International Society for the Study of Hypertension in Pregnancy (ISSHP) and to increase awareness among legislators.

“It connected us to an international agenda,” Tsigas said. “And it gave us an opportunity to reach out to Capitol Hill and begin advocacy and public policy efforts.”

With each gala, one constant is the telling of stories— powerful stories that put a face on preeclampsia through video stories accompanied by verses of “Amazing Grace.” The stories connect the guests: whether they are survivors and their families, researchers, members of the medical community or someone with no previous experience with the pregnancy disorder.

“The combination of all these people who care or are learning to care leads to a very inspiring evening,” Tsigas said.

When Jill Siegel coordinated the 2009 event in Chicago, she was worried about raising money in a shattered economy. There were gaps in sponsorships and donations. She asked survivors to write their stories and ask for donations of support so they could be included in a special commemorative program, an effort that netted nearly $7,500.

“It is so important we tell our stories,” said Siegel, director of communications for the Foundation. “Statistics may be hard to remember but you won’t forget the stories and if you remember them, you can share them with others and if you share them with others you can save lives. That’s one of the key roles Saving Grace plays.”

Sometimes, those stories are caught in unforgettable moments. Lauren Larsen was chairing the 2006 gala in San Francisco when her 5-year-old daughter, Clare, walked up to Tsigas with a month’s worth of her “giving money,” pressing four $1 bills into her hand.

“I thought I’d cry on the spot,” Larsen said.

When Larsen was asked to chair the gala, she didn’t feel prepared for the role but a bold move allowed her to double the previous year’s sponsorships. The motivational speaker gave talks for Johnson & Johnson and decided to e-mail the chairman and CEO, asking if he’d like to co-chair. The subject line read “Please say yes.” William Weldon agreed and his company became the lead sponsor, bringing in $265,000.

“The night just came together and it was just amazing, people laughing, people crying, people having their hearts touched,” she said.

Jaime Nolan coordinated the gala again in 2007 with co-chair Leslie Weeks. It was held in Boston, in a small room that forced an intimacy unusual among charity galas. The keynote address and Siegel’s personal story of survival were not delivered like rehearsed speeches but more like living room conversations.

“It felt as if they were personally connected with each person there,” Weeks said.

Maybe that’s what led to a moment that still gives Tsigas chills. During the auction there was a paddle drive and as it was nearing to a close, a man stood up and asked what the total was. It was quickly calculated at about $20,000. He challenged the guests to reach $30,000 and he would match it. Paddles were flying and the goal was reached within minutes.

“I was flying around the room, with tears in my eyes, trying to get bid numbers,” Tsigas recalled.


And Nolan remembers the tears too, from when she was standing at the podium, thinking about her daughter’s legacy, a legacy that has led to more than $800,000 to support the work of the Preeclampsia Foundation.

“While I know that the event is not about Grace herself, it was through her that the event was created and has been able to touch so many,” she said.

 

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At the recent Saving Grace – A Night of Hope event in Seattle, Washington, many individuals graciously purchased auction items or made personal donations. Many guests also provided us with their employer’s Matching Donor Forms. It is impressive that some of our donors had already researched their employers’ policies and had discovered this golden opportunity – the Employer Matching Gift Program.

An Employer Matching Gift Program is one where an employer matches an employee’s charitable donation, usually dollar for dollar. Some companies call this a Cash Grants Program or a Matching Grants Program. These Gift Programs can quickly multiply the impact of one employee’s donation, often quite substantially. In some cases an employer may even match up to 2 or 3 times that of the employee’s donation. But even a 1:1 match is incredibly impacting. Along with matching monetary donations, some employers even have programs wherein the company will match qualified volunteer hours with an assigned cash amount.

It is the responsibility of employees to get the “Matching Gift” process started with their employers. Some employers provide their Company Match Program guidelines online, or will supply the information through the Human Resources office. There are even companies out there that will match donations of retirees or employee spouses. An added pleasant surprise is that most employers make this process relatively simple, and usually request minimal documentation (normally only requiring an official donation receipt as well as completion of a quick online form or a one-page matching gift form).

Most employers have stipulations in place regarding minimum or maximum annual donation amounts, and may have other specific requirements, as well. It is the company’s choice as to how the Matching Gift Program is constructed. But any amount of matching gift will make a positive impact on a non-profit foundation.

What are your employer’s policies? Investigate your company! Ask your friends and family members to research their employers’ giving program policies as well!

In next month’s newsletter, we’ll continue sharing information about another avenue that can be used to receive employers’ donations – Philanthropic Grant Programs.

 

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Posted on in Raising Awareness and Fundraising

Lauren Larsen thought she had a wonderful life: loving marriage, good friends, successful career and her first child on the way. Shortly after entering the ninth month of her pregnancy, Lauren's life took a perilous turn due to the rapid onset of preeclampsia. After more than a month in intensive care and years of recovery work ahead of her, Lauren emerged from her trials with the desire to build a life full of purpose and meaning. Zuzu's Petals: A True Story of Second Chances is Lauren's real-life memoir of her personal battle with preeclampsia and her drive to make her "second chance at life" count for more than the average person.

2010 Saving Grace co-chair Autumn Spear described Zuzu's Petals as one of the best books she has ever read. "Obviously I have a personal connection to the book having shared severe preeclampsia, but it's also just a great story and written with humor and grace... Many time I found myself saying aloud 'Ah ha! See, that did happen, I knew it!' To have a book that so thoughtfully details such a tragic experience is a blessing and gift."

Lauren's book gives voice to the countless number of women who have survived preeclampsia and were left wondering, "Why did this happen to me?" Her dry humor and stark honesty permeate the story, letting the reader feel that they are experiencing each increasingly devastating moment of her experience. By the end, the reader triumphs with Lauren as she not only conquers the effects of her hospitalization, but chooses to make her existence count.

One of the most generous aspects of Zuzu's Petals is that each purchase from Lauren's website can be designated to benefit preeclampsia research. To purchase a copy and enjoy an excellent, if not grimly realistic, story, please visit Lauren's website and select "preeclampsia research" for a portion of your purchase to benefit the Preeclampsia Foundation. You can also find more information about the book in the Preeclampsia Foundation marketplace.

 

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The Promise Walk for Preeclampsia has made leaps and bounds in pinning the map with walk locations, recruiting volunteers and raising awareness since it was established in 2005. Today tens of thousands of people and businesses are exposed to the imagery and messaging of the Promise Walks. Media coverage, banners, flyers and posters will deliver the message to almost two dozen cities this year.

The Foundation seeks national sponsors that share a passion and commitment to women and their families: a sponsorship which affords businesses and organizations the opportunity to align themselves with an vital health cause that impacts mothers, babies and young families. Who could argue with the PR value and marketing potential of this demographic?

The immediate benefit to a sponsor includes advertising on 10,000 shirts, media coverage, verbal and printed recognition at all our events, and more. See our sponsorship benefits for details, or contact Sponsor Coordinator Jamie Schmidt to create a custom package for your business.

Ultimately, support from sponsors allows the Preeclampsia Foundation to take crucial strides toward saving mothers and babies during the most important time in their lives. Do you or somebody you know have the passion to make this kind of impact as a Promise Walk sponsor?

 
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Over 500,000 infants are lost worldwide as a result of their mothers having a hypertensive disorder of pregnancy. Artist Susannah Pabot, a two-time preeclampsia survivor, has decided to transform some of the continued sadness and sense of helplessness she shares with so many other survivors into a creative project: a written word and public art installment to commemorate the loss of life due to preeclampsia and raise awareness of the disease within the wider public.


Her planned project is to install a sea of fifty small, simply-designed, identical cradles on a grassy area, each commemorating a particular infant lost to preeclampsia or HELLP. The cradles will stand empty of babies, but they will not be empty of words: of love, longing and memories. When the viewer steps closer, s/he will find inside each cradle words commemorating the brief life of a lost infant, words shared by families with the artist and woven into a creative text.

The installation will be exhibited in Providence, RI, later this year. Susannah is also currently fund-raising to take the exhibit to other locations within the US.

Families who would like to dedicate a cradle to their baby by sharing existing written texts, web pages and/or by responding to a brief questionnaire should email Susannah directly at susannah_pabot@brown.edu.

 
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Have you ever been standing in the checkout line and had the urge to tell the pregnant woman in front of you about preeclampsia, but felt unsure what to do? If you follow these three easy steps, you just might be able to help save a life!

Initially, approach the conversation with a flattering question, "Congratulations, when are you due?" then lead in with "Is this your first baby?" Most women love to dote on the impending arrival of their baby. Humor is also a great approach. For example, "You look incredible! When I was in my last trimester I was so swollen from preeclampsia, I couldn't see my own feet." Little conversational volleys get the dialogue flowing in a comfortable direction.

The second step is to segue into your story. When you share a snippet of your life or pregnancy experience, it can provide a perfect opportunity to explain preeclampsia. Newsletter Writer Laura Dale transitions into her story by saying, "I have a healthy 3 year old son. He's our miracle baby, born premature as a result of being induced early due to preeclampsia," and says she has never had a mom walk away at this point in the exchange. This is the hook, line, and sinker portion of the conversation.

Many times, women will say, "What is preeclampsia, I have never heard of it?" or "My doctor mentioned preeclampsia; I didn't realize it was so dangerous?" This is your golden opportunity to begin step three of the conversation: share the information, facts and direct them to the Preeclampsia Foundation website for additional help. By sharing this valuable information you are making a Promise for Tomorrow - a promise that there will be a tomorrow for these moms and babies.

 
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As many Promise Walk participants know, raising money early in the year can be quite difficult, particularly coming out of the post-holiday slums. Nevertheless, two Promise Walk for Preeclampsia volunteers did not let any excuse stop them from raising the highest funds for an individual and team. Janel Kovarik, the leader of the Chicago “Down with BP” team, raised $750 toward her personal goal of $1000, while Samantha Reyes and her team “Scuderia Reyes” of San Diego have raised an amazing $1,240 to date.

How did these two amazing volunteers do it? Janel, a two-time survivor of severe preeclampsia, explained that for her, it was all about networking with different circle of friends and telling people her story.

“Tell people your story- Tell them! Ignorance is bliss,” Janel explained. Her advice to other teams? Incorporate a cathartic way of telling your story to your friends that emphasizes your personal connection to the condition and your desire to prevent more women from going through preeclampsia.

Samantha, a HELLP syndrome survivor, agreed, emphasizing the importance of supportive friends and family and the presence of her employer’s corporate matching program to her fundraising success. “The ultimate goal is to find a cure. Every dollar makes a difference and brings us closer to ensuring that other families won’t have to experience preeclampsia.”

Janel’s responses:

1. Why do you walk and raise money for the Preeclampsia Foundation? I am walking and raising money for the Preeclampsia Foundation because I am an avid runner (in Chicago, I am a part of the PF team organizing the walk and now 5K!) but more importantly, I am a survivor. I had severe preeclampsia and severe hypertension with both of my children's pregnancies.

2. To what do you attribute your success in raising so much money for the PF? I believe Facebook has helped quite a bit actually! In addition to Facebook, I am a part of a lot of groups within my different circles of friends. Examples: my book club friends, my Ladies Lunch Club friends, former work colleagues and I sent my messages through my personal family blog. I also am organizing a stationary party in which all the proceeds go to the Foundation. I incorporated a cathartic way of telling my story to my friends that HOPEFULLY leads to helping more women that are going through what I went through, as well.

3. What advice would you give other teams and walkers to help them raise funds? Tell people your story. Tell them! Ignorance is bliss and people do not know much about certain medical conditions, so telling your story, openly, helps people, especially those close to you, know what preeclampsia is. It touches them and shows that pregnancy is not all 'normal and perfect and easy', like most of the world would like to think. I cannot tell you how many emails I received in response to my personal email (telling my story) that said, "Janel, I had no idea what you and your son went through. I am sorry."

4. What do you hope funds raised for the PF will go toward? I pray that the funds go towards research for a cure and cause. I also hope doctors can become more educated on the condition, as well.

Samantha’s Responses:

1. Why do you walk and raise money for the Preeclampsia Foundation? My twins and I almost lost our lives to HELLP Syndrome. My family and I are grateful for the excellent care we received from UCLA. We often think about other people who don’t have access to the same excellent care. Our hope is that through this Foundation, people and healthcare providers will have available to them the information needed to diagnose preeclampsia and HELLP early enough for treatment. Perhaps even some day, the cause and cure will be discovered.

2. To what do you attribute your success in raising so much money for the PF? We have great friends and family who are always there for us. It’s easy when so many people care and genuinely want to help. Also, my company matches donations from their employees.

3. What advice would you give other teams and walkers to help them raise funds? This is a scary life-threatening disorder and some people are not as lucky as we are. However, it’s important to stress the hope that this foundation provides. The ultimate goal is to find a cure; every dollar makes a difference and brings us closer to ensuring that other families won’t have to experience preeclampsia.

4. What do you hope funds raised for the PF will go toward? Research to someday find the cause and cure for pre-eclampsia.

 

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The countdown to The Promise Walk for Preeclampsia continues with teams and individuals scrambling to secure the most donations. This month we celebrate our top three teams: Scuderia Reyes (San Diego),
Cooper Landon Barnett (San Jose), and Team "Down with BP" (Chicago), all with over $1,000 raised so far!

The top three individuals are giving the teams some stiff competition. Lisa Bloch (San Jose) has already brought in over $1,000 and Sarah Scott (Raleigh) and Stephan Pollitt (San Jose) are already over $500. With a little over a month to go for some of the walks, turn on the heat!

When you register for a Promise Walk and raise funds as an individual or as a team, you are rewarded for your efforts with a Promise Walk ribbon magnet, key chain or hat as you reach certain fundraising levels, but those rewards can turn into much more "rewarding" prizes when they help you initiate a conversation about the Promise Walk and the Preeclampsia Foundation. Each one of the awareness-raising items encourages questions from people you meet, opens the door to share your personal story or why you are committed to this important cause, and lets other survivors and supporters know that there is an organization changing the lives of mothers and their babies and catalyzing research to find the cause and cure.

Director of Operations Angela Little explained, "These are much more than key chains - they are a physical, tangible reminder of our promises to ourselves, to our families, loved ones, and to our communities around us. The Promise Star key chains themselves will have the words "Promise Walk" stamped in them, but the purpose of the star is much more than just something to hang on a key chain - it is a symbol of a promise."

Fundraising for the Promise Walk is easy with personal fundraising pages and social media links on the website, as well as a downloadable donation form if you prefer face-to-face fundraising.

 
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Raising awareness in 2011 is no easy task.

A recent internet search of awareness efforts in May turned up 22 different causes, from asthma and allergy to stuttering awareness. As yet, the National Health Observances Calendar doesn't include Preeclampsia Awareness Month, although efforts are underway (with Congressional support) to add it.

So what can the Preeclampsia Foundation, an organization that recently celebrated its 10th birthday, learn from more established organizations and their campaigns?

Pink ribbons, red dresses, and yellow rubber bracelets immediately come to mind. Certain trends are prevalent in these successful awareness campaigns: a concerted public relations campaign, a celebrity spokesperson, partnerships with like-minded organizations, but most importantly, a clear message of the impact that a condition has on the American population.

Can an awareness "month" matter as we seek to raise the profile of our lesser-known, but equally worthy cause, amidst all the media noise - social and traditional - that surrounds us today? Raising awareness in 2011 may seem impossible, but we're trying - and succeeding - with your support.

Since its inception, the Foundation's motto has been "know the symptoms, trust yourself." This still rings true - and loudly - today. For a disease like preeclampsia that can present itself disguised as a number of less serious conditions, is hard to pronounce and is often called by many different names, a clear concerted message about the potential impact of the disorder and an understanding of the warning signs can literally be life-saving.

The first line of defense has to start with the pregnant woman and the people around her who care about her well-being. When armed with the proper information about relevant warning signs, she can be a forceful advocate for her own care, securing attention from care providers who respond diligently.

Hundreds of volunteers across the country are planning events to call attention to the disease. Twenty-three Promise Walks for Preeclampsia are being held nationwide with related activities such as guest speakers, appearances by media personalities, free blood pressure screenings, silent auctions, raffles, and memorial events. Preeclampsia awareness magnet "ribbons" are popping up on cars and a public art project has been created that will tour the country, beginning at Brown University in Rhode Island. Check out these events as well:

  • May 11 from 2-3 p.m. (EDT) - The Preeclampsia Foundation will be a featured guest on the March of Dimes' Twitter-based "Pregnancy Chat" an hour-long discussion about preeclampsia. To participate, register on Twitter and search for #pregnancychat during the event to participate.
  • Week of May 2 - NewsMomsNeed, the March of Dimes official blog will feature two members of the Preeclampsia Foundation as guest bloggers - one in English and one in Spanish - highlighting the unique challenges faced by preeclampsia survivors in planning for future pregnancies. The Spanish blog will be posted at blog.nacersano.org.
  • May 18-19, Brown University, Providence, Rhode Island - Debut of "Field of Cradles" public art project by artist Susannah Pabot.
  • Survivor Shirts, specially created to duplicate the Foundation's survivor pin design by artist Melissa Muir, and "awareness ribbon" car magnets are available via the online Marketplace. Look for special coverage about preeclampsia on Babycenter.com and other parenting blogs and websites.

But raising awareness is about more than a banner or a single event. Preeclampsia Awareness Month is about taking action. May is not a culmination, but a beginning. So, after you have absorbed the critical messages about preeclampsia, don't let the knowledge you have gained go to waste. See our "Engaging Walkers to Create Lifelong Supporters" for some tips on catalyzing your local group and taking further action.

Make 2011 a year of action for preeclampsia awareness.

 

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Many of our newsletter readers will participate in or support a Promise Walk for Preeclampsia this May and June. The Promise Walks are one of the biggest fundraisers that the Preeclampsia Foundation hosts: they not only generate funds for the Foundation, but raise awareness about the disease in local communities. For many people, a walk is their first experience with the Foundation - their first time connecting with our community and becoming aware of preeclampsia's devastating impact. This connection is an excellent opportunity to motivate Promise Walk attendees to become year-round Foundation supporters within their local community.

There are many ways you can help get your neighbors, friends and families involved after the Walk is over:

  • Encourage walkers to sign up for the Expectations newsletter to stay connected and motivated about our work; to see the impact their contributions are making.
  • Host an event to raise awareness or money for the Preeclampsia Foundation. 92% of Promise Walk donations go directly back into programs of the Foundation (research, patient education, and provider education).
  • Take awareness brochures to doctors' offices and clinics in your community. If you go for your regular gynecological exam (and you should!), there is no good reason at all for you to not take brochures to your doctor's office with the request that they make them available to patients.
  • Use social media and networking. It's one of the fastest ways to spread the word about preeclampsia. Join the cause on Facebook and educate your Facebook friends by inviting them to join the cause. Forward this newsletter to your contacts with a personal account of why the cause is so important to you.
  • Educate your community. You can fight preeclampsia in your own backyard by asking community leaders to provide education. Think of the leaders you know in your community - your spiritual leader, your government representative, your club president, the CEO of your company, the scout troop leader, the school principal. Organize a speaking opportunity to tell your story or invite a survivor to speak, closing with a call-to-action for the audience.
  • Personally thank our sponsors and donors. Don't wait until next Walk season to engage them. Show them your appreciation and inform them of the successful outcomes from the Walk and how you plan to build on that in the future. Help them understand that they are a partner in that effort.

For more information or help obtaining awareness-raising items to distribute please contact Angela Little.

 
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The Preeclampsia Registry

    The Preeclampsia Registry is a "Living Database" bringing together those affected, their family members, and researchers to advance knowledge and discover preventions and treatments for preeclampsia, HELLP syndrome, and related hypertensive disorders of pregnancy.

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