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Team Small but Mighty – Importance of Patient and Family Involvement in Fundraising Initiatives Q & A

Learn why ALGS Mom, Erin Hasselberg Lucca, participates in the Fight for a Better Life campaign each year and how she views working in partnership as a parent to advocate and raise awareness for patients and families and the ALGSA.

Q. What is your relationship to Alagille Syndrome?
My daughter Kate (16 months old) was diagnosed with Alagille Syndrome due to a de novo genetic mutation when she was six weeks old.

Q. How did you learn about the Alagille Syndrome Alliance?
I immediately googled everything about Alagille and set up a call with Roberta and Cher shortly after we got the news.

Q. What is your inspiration for joining the FIGHT for a Better Life campaign each year?
I know how critical patient advocacy is to any health issue. As a breast cancer survivor (diagnosed at age 34), I recognized then the importance of community awareness, education, support systems, and fundraising to help researchers and to help families. Not everyone is blessed with amazing health insurance or strong support systems, and organizations like the Alagille Syndrome Alliance are crucial to so many people’s abilities to navigate heavy and complex topics.

Q. Why do you feel it is important to raise funds for the ALGSA?
ALGSA is a small but mighty organization and unrestricted funding (i.e. donations without stipulations on what you do with it) is critical to their function. I would love to see ALGSA’s FIGHT grow their goal to $100,000- can you imagine what $100,00 would do? More substantive scholarships to more people, more webinars, more advocacy at the state and federal level for Rare Disease awareness. The possibilities are endless, and I want to be a part of making that happen for ALGSA and for Kate.

Q. How do you rally your coworkers to get involved? How do you open the conversation?
I start by leveraging ALL my social media platforms: Instagram, Facebook and LinkedIn. To note, I am also a connector- I’m not shy about connecting with people (particularly LinkedIn) because you never know when and where a connection might come in handy. And, I make my message personal. I don’t use generic writing that may be provided by a site. I tailor my message and say what this cause means to me and I include a picture. Make it about a real person and a real situation. I also utilize email for my non-social media folks (usually family) and put out a direct ask- just cutting and pasting whatever I put in LinkedIn. Always be sure the link to your fundraising site works (note in Instagram you have to put the link in your Bio and note that in your post). Think about email for all your communities… a church/temple/mosque group, a book club, a mom’s/dad’s/parents’ group, your kids’ friends’ parents, etc. All these people care about you! And people WANT to help you! Give them a specific way to do it! ASK! Then I don’t quit til I’ve met my goal. I provide weekly updates on our progress. I note that all dollars count- large and small! If useful I make it really specific. For example, I need to raise $500 more dollars to meet my goal- can I get 20 people to give $25? I don’t do anything else! For me as a full-time working mom of two young kids, hosting a fundraising event is too much work with too little reward. Technology has blessed us with amazing connectivity! Use it for something good! And don’t worry about what people think… life is too short and your Alagille FIGHT is too short. If people don’t like a cause or you fundraising for a cause that is deeply important to you then that’s on them. I also write handwritten thank you’s to each and every donor (you can get an address list from the fundraising administrator)! It helps and it makes the donor feel very appreciated!

Q. Do you have any tips for someone who wants to talk to their co-workers about the FIGHT but they are anxious about starting the conversation?
I am not shy! I learned when raising funds for Dana-Farber Cancer Institute’s Program for Young Women with Breast Cancer, that you don’t get anywhere if you don’t ask. And what’s the worst that can happen- people could say no. And that’s ok! In 4 years I raised over $40,000 for that program, and I did that by asking. I find that starting the conversation on social media, more people end up asking you questions! And that makes it easy! If you have a work Intranet site and are allowed to do so (and feel comfortable sharing your story), post your efforts there! Or old school- put up a flyer in a cafeteria or lunchroom with a QR code to the fundraising site (Go here to generate one!(https://www.qrcode-monkey.com).

Q. You have had great success with matching gifts! What is your advice for someone who wants to facilitate matching donations through their employer?
Again I’m not shy. I ask the fundraising site/administrators for my donor list. I look at emails and who works at my employer and I send my colleagues a link on how to submit a receipt through our matching donation portal! If not my employer, at the END of my fundraiser, I usually do a follow-up post asking folks to look into matching gifts at their employers and that taking 5 minutes to do that could DOUBLE their impact!

A big thank you to Erin and cute little Kate for spreading the word on our Fight for a Better Life Campaign!

Join the FIGHT, today, by donating or creating an individual or team page here: https://alagille.org/fight/

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