The Power of Teamwork: IPIF’s community support & how it helped make their campaign a success


The Incontinentia Pigmenti International Foundation (IPIF) has just launched their first successful Fabrily fundraising campaign! IPIF is a voluntary nonprofit organization whose mission is to encourage and support research on Incontinentia Pigmenti (IP), which is a genetic disease that affects the skin, hair, teeth, and central nervous system.

Not only does IPIF fund research to help find a cure for this debilitating disease, but it also offers advice, information, and emotional support to families affected though discussion forums and social media.


IPIF’s first Fabrily fundraising campaign featured a variety of shirt styles and ended up selling over 100 different items generating over £500 GBP/€650 EURO/$800 USD.


IPIF’s President and fundraising coordinator, Laura Richter, offers insight and tips on IPIF’s fundraising experience through Fabrily.

Can you give us a bit more information on your organization?
Susanne Bross Emmerich whose extended family gave birth to a baby girl with Incontinentia Pigmenti, founded IPIF in 1995. Susanne made a promise to her “that when she was old enough to have her own children the mysteries of IP will have been uncovered, and she would not have to suffer the experiences of her parents.” The Foundation initially was named National Incontinentia Pigmenti Foundation, (NIPF) it wasn’t until June 1, 2001 that the new name Incontinentia Pigmenti International Foundation, (IPIF) was adopted. This name change occurred because in 1996 Susanne organized the International IP Research Consortium (IIPRC), a Consortium which after much dedicated time and work with the assistance of volunteering families world wide, and the generous donations of others located IP on the NEMO gene. This was an enormous breakthrough for Incontinentia Pigmenti and now more is known and pregnancies can be tested prior to birth. The first step in her promise was completed, but there is much work still needed before we will know everything about IP leading someday the proper diagnosis, treatment and possibly a cure.

The foundations physical location is in New York, NY USA. On May 1, 2014, I was honored when asked to begin running the foundation and I hope to continue to do so for many years to come. I must add that our Foundation is a family. IPIF families also volunteer with me in the efforts to improve the futures of all individuals afflicted with IP. Without our volunteering families we could never have come as far as we have or go as far as we hope too. 

Congratulations on your successful campaign – how will your organization use the funds that have been raised?
We ran this T-shirt campaign along side with an additional booster and 5K live and virtual events. With the monies raised from all of our efforts combined we are helping fund a much-needed IP Biobank. The IP Biobank will be a great opportunity for all patients around the world to be included in new therapeutic clinical trial projects. It will give scientist around the world who do not have access to a sufficient number of cases the research tools they need to continue with their work and the ability to start new projects. The IP Biobank is the future all those affected. If you would like to learn more about this wonderful project we encourage you to visit the IP BioBank website

How did you initially hear about Fabrily and why did you decide to use them?
We found Fabrily while doing an online search of a T-shirt campaign company that would ship internationally. After reviewing several options we thought Fabrily offered exactly what we would need for our families with a great product that shipped to 178 various countries around the world. What made Fabrily our choice over the other companies was their ability to ship worldwide along with offering our supporters more then one shirt style.

 Overall how was your campaigning experience ? Would you recommend Fabrily to other organizations?
I personally could not be happier with Fabrily. They offered personal assistance, returned every email sent in a very timely fashion and went out of their way to help us on various social media sites with complimentary advertisements for use. Feedback from our families was also very positive when they individually contacted Fabrily. We will without a doubt share our experiences at Fabrily with others.

What were some of the specific promotional methods you used for your campaign?
I started with our IPIF family members. With their help and by us all working together we were able to make this campaign successful. The campaign started in our private support group for IP on Facebook. From there we created a public Facebook event where members and friends of friends were able to send more and more invitations to join us. We also kept communicating with everyone about the progress of the campaign and encouraged sharing through personal Facebook profiles, Facebook groups/pages, email, personal phone calls to family. We additionally made our campaign efforts known on twitter and IP family blogs.

Were there any particular aspects of using Fabrily that really stood out to you?
Kate Shoaf (Fabrily Campaign Manager) went above and beyond any company contact I have ever worked with before. She sent a friend request to our Ipif IP Facebook profile and joined the event we had created and followed us on Twitter. Her communications with myself and other IP family members was more then expected and appreciated. The complementary advertisement banner Fabrily created for us was a priceless tool. For countless years to come we will use their design with our awareness ribbon and we thank Fabrily for this additional gift of Hope.

The Fabrily Team would like to congratulate IPIF on their outstanding fundraising efforts and the wonderful work their organization does. For more on successful fundraisers, promotional tips, video tutorials, and campaign insights please visit our Success Stories page.



Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s