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How to Promote Awareness and Raise Funds – Cacucciolo Family Joins the Herd!

This April, patients, families and volunteers can celebrate National Primary Immunodeficiency Awareness Month in their local communities, and the Immune Deficiency Foundation (IDF) provides you with many ways to do so–during April or any time of year!

Join the Herd! is an easy and fun way to promote awareness and raise funds. IDF supplies paper cutouts of the THINK ZEBRA! logo to place near the cashier, receptionist or main lobby. All customers, patrons or visitors are asked to support IDF by buying a cutout for one dollar or more.

Kristy and Nick Cacucciolo of Rancho Cucamonga, CA ran the Join the Herd! campaign at their family’s Mountain View Chevrolet dealership in December 2012. Their 10-year-old son Justin was diagnosed with Common Variable Immune Deficiency (CVID), and the family values the resources and support they have received from IDF. According to Kristy, who has organized four blood drives over the past few years, adding Join the Herd! to their blood drive was “fun and very easy!”

The family got the word out in their community by promoting the event to customers at the dealership but also through some advertising, including posting fliers featuring Justin’s story photo around town. “Although, Justin doesn’t like his picture hanging all over the city and his school, he knows this benefits so many people … The community is so very supportive.”

Participants hung their own cutouts, and the dealership filled up quickly. On the day of the blood drive, they raised more than $1200 and $300 over the rest of the month. Because this disease affects their family weekly, Nick had the dealership match the donation. “We do not want Justin to grow up without the support that he needs to flourish,” explains Kristy, “We love IDF!”

This April, the Cacucciolo Family asked a local restaurant, Rosa Maria’s, to run the Join the Herd! campaign, and it’s going well!

Families who want to make a difference can run the Join the Herd! campaign in their community like the Cacucciolos. Click here to learn how.

IDF thanks the Cacucciolos, Mountain View Chevrolet, Rosa Maria’s and all those who supported the campaign! Join the Herd!

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By IDF_Kara – April 23, 2013

SCID, Angels for Life Foundation Hosts 5th Annual Charity Golf Tournament

SCID, Angels for Life Foundation will host the Brandon and Taylor Dahley “Reaching for a Cure” 5th Annual Charity Golf Tournament on April 6, 2013. The event will benefit the foundation which works to increase awareness, benefit research and provide parent and family education for those affected by Severe Combined Immune Deficiency (SCID).

Brandon and Taylor Dahley “Reaching for a Cure”
5th Annual Charity Golf Tournament

Saturday, April 6, 2013
Lone Palm Golf Club
Lakeland, FL
1:30 p.m. to 7:00 p.m.

Cost: $150 per golfer or $580 per team
Reception only: $20 per person
Register by March 31, 2013

For more information or to register for the event, contact Heather Smith at Heather@scidangelsforlife.com.

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By IDF_Kara – January 17, 2013

Penn Family Bowling Fundraiser Featured in Local News

IDF Volunteers Jeremy and Sara Penn organized a bowling fundraiser for IDF in memory of their daughter Samantha, who was diagnosed with Severe Combined Immunodeficiency Disease (SCID) and in April 2011, at just 18 months old, passed away. The bowling fundraiser, held December 26, was featured by a local news outlet: Click here for the video and article.

To learn more about fundraising for IDF, visit http://primaryimmune.org/take-the-zebra-challenge.

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By IDF_Kara – January 2, 2013

“Test for a Cause” – Test Proctors Donate Their Wages to IDF

Samantha Penn

Staff members at the University Assessment and Testing (UAT) department of Oklahoma State University proctor tests on a regular basis. This summer, they administered a special testing session for Teach for America, an organization that prepares recent college graduates to teach in under-served rural and urban schools. But this test was special for more than one reason.

The department chose to “Test for a Cause” and donate all proctoring fees to a charity, specifically to the Immune Deficiency Foundation (IDF) in memory of Samantha Penn.

Samantha, daughter of Jeremy and Sara Penn, was diagnosed with Severe Combined Immunodeficiency Disease (SCID). In April 2011, at just 18 months old, she passed away.

Jeremy, the Director of UAT, explains, “I told the staff about the important work of IDF and the SCID Initiative, and immediately they agreed that IDF and the SCID Initiative would be our cause.”

At the start of the testing session, staff members explained to the more than 100 examinees about the donation and how it would help those with primary immunodeficiency diseases, like Samantha. In her memory, UAT staff donated $736.89 to IDF.

“Testing for a Cause really changed the testing and proctoring experience knowing that this fall the examinees would be teaching in under-served communities and that the testing fees would go to support the IDF and the SCID Initiative,” says Jeremy.

Samantha certainly lives on in her family and loved ones. Jeremy and Sara are IDF Volunteers, working to promote SCID awareness and raise funds for IDF. They feel it is an important cause and encourage others to get involved.

Baby Isaac Penn

“Growing up in the Midwest, I was taught to be humble and not draw lots of attention to myself,” says Jeremy, “Remembering how courageously Samantha faced her many treatments and procedures in the hospital emboldens me to step out of my comfort zone and feel like it is okay to be the center of attention, remembering too that I am speaking for her since she is no longer able.”

The Penns recently welcomed a new addition to their family, baby Isaac, born August 21. He was screened for SCID and tested negative. Mom and dad happily report that Isaac is doing great, growing more and more each day.

Jeremy says, “We will enjoy telling him about his big sister.”

Thanks to the Penn Family for sharing their story and working on behalf of IDF! Special thanks to the UAT staff members for their generosity!

Click here to learn more about SCID Initiative and find out how you can get involved!

Below are more photos of Samantha…

Samantha Penn
Samantha Penn
Samantha Penn
Samantha Penn
Samantha Penn
Samantha Penn

Samantha Penn
Samantha Penn
Samantha Penn
Samantha Penn
Baby Isaac Penn
Baby Isaac Penn


 

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By IDF_Kara – October 19, 2012

Deep in the Heart of Texas Yvette Shorten Promotes IDF, Raises $500

Yvette Shorten attended a local Cinco de Mayo festival in Huntsville, TX. Her exhibit featured her personal story and IDF THINK ZEBRA! information.

IDF volunteer Yvette Shorten of Huntsville, TX participated in three different events in just two weeks to promote primary immunodeficiency diseases awareness and raise funds for IDF. Yvette addressed the congregation at her church, St. Paul United Methodist Church, April 22. Then she organized IDF Blue Jeans for Healthy Genes at Sam Houston State University April 25, raising $500. Finally she braved the Texas heat for a local Cinco De Mayo festival May 5.

Yvette, whose family has been directly affected by primary immune deficiency diseases, created a fantastic exhibit about her personal story and the IDF THINK ZEBRA! campaign, which she displayed at each event. She feels it’s important to tell her story and enjoys connecting with people. Yvette describes one such connection from the festival, “I met a lady who lost her sister as an infant to pneumonia. It was not until years later when she became ill did the physicians put the puzzle together…her sister had CVID.”

Yvette wanted to not only reach out to people and promote awareness, but she also wanted to raise funds for IDF. She had previously organized IDF Blue Jeans for Healthy Genes at Sam Houston State University’s College of Criminal Justice and Law Enforcement Management Institute of Texas, where she is an assistant program coordinator. This year she raised $500. Each participant donated $10 to wear jeans, and zebra accessories were encouraged. The event was promoted on the school’s website: http://www.shsu.edu/~pin_www/T@S/2012/apr1512up.html.

Yvette Shorten speaking at her church, April 22.

The school’s website mentions a wonderful development in the state of Texas, making Yvette’s efforts even more poignant. Starting September 2012, Texas will be among several other states to implement newborn screening for SCID. “We fought for the last couple of years to get SCID on that test card, which screens for 28 different life-threatening diseases,” Yvette says, “If not treated, most of the SCID-effected infants die within the first year of life, but with the early detection, a bone marrow transplant can save the child’s life. This is why it was so important to have this added.”

A Texas-size thank you to Yvette and all those who supported her efforts!

Help fundraise for IDF! Click here to learn more about Taking the Zebra Challenge!

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By IDF_Kara – May 29, 2012

Dad Asks Corporation to Dedicate Fundraiser to IDF, Raises $445

The employees at CEMEX in Houston, TX participated in their monthly Jeans for Charity initiative for IDF! Mauricio Naranjo, CEMEX employee and father of a two-year-old son with a primary immunodeficiency disease, asked his Human Resources Department to dedicate the April event to IDF in honor of Primary Immunodeficiency Diseases Awareness Month. They raised $445!

According to Mauricio, Jeans for Charity is a CEMEX Human Resources initiative started in 2011 through which employees contribute $5 and can wear jeans to work on the last Friday of every month. The money collected from the employees of the Houston Office is donated to a different organization each month, and employees can make recommendations of organizations or institutions for which they would like to fundraise.

Mauricio suggested IDF because after his son’s diagnosis of XLA, a type of primary immunodeficiency disease, he and his family struggled to accept the idea of this new challenge in their lives. He says, “All the information provided by IDF has provided us with a great relief. We are now better informed to make sound decisions regarding our son’s health. We feel we have a partner on our side guiding us through this road.”

Thank you to the Naranjo family and CEMEX Houston employees!

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By IDF_Kara – May 23, 2012

Support the Zebras! One Family’s Story Inspires, Raises More Than $1,300

The Huot Family of Philadelphia reached out to their family, friends and coworkers to “Support the Zebras!” because of their own little zebra, three-year-old son Zak. Heather Huot, Zak’s mom, started a personal fundraising page through the Immune Deficiency Foundation’s Take the Zebra Challenge! and began sharing her family’s story. To date they have raised $1,355, exceeding their $1,000 goal.

At 18 months, doctors diagnosed Zak as failure to thrive, and at age three—after a year and a half of testing—he was diagnosed with CVID. Zak now receives monthly IVIG at home and attends preschool. He has not had any serious illnesses or infections since starting IVIG, and for that the family is so grateful. “When Zak started this process, we were very uneducated about primary immunodeficiencies,” says Heather, “Dr. Jordan Orange at The Children’s Hospital Philadelphia suggested early on that we look to the IDF for information and resources.”

Heather requested IDF materials, and then she and her husband took their education a step further by attending a Patient Education Meeting in Philadelphia, which Heather describes as amazing. “We were able to talk with people who have been living with this disease for years, hear their stories and have real tangible hope for Zak,” says Heather.

“Soon after this, I decided I needed other moms to talk to about what it’s like having a child with PIDD. Again, I reached out to the IDF and quickly was put in touch with another mom. I now have a network of moms that I’m in contact with … All of this is why we decided to do a fundraiser. In the year that Zak has been diagnosed, IDF has been an incredible resource and support for us and we felt we needed to do something to give back from our little corner of the world.”

And that little corner of the world is generous, helping the Huots surpass their $1,000 with $1,355 raised! To really make a difference, Heather put a link to their fundraising page on facebook multiple times and sent regular e-mails to family, friends and coworkers. She believes direct e-mails have been the most effective because she can share updates and encourage giving.

“My husband and I have been overwhelmed by the outpouring of support by our family and friends.” says Heather, “It not only makes us feel that we were successful in supporting IDF, but also really touches our hearts and let us know how many people are behind us every day. It has also inspired us to raise the bar next year and come up with additional ways to raise money for IDF in the years to come.”

IDF is tremendously grateful for families like the Huots. Thank you to all those who have donated to IDF!

Click here to learn more about Taking the Zebra Challenge! and creating your own personal fundraiser for IDF!

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By IDF_Kara – May 9, 2012

IDF Staff Surpass $1,000 Goal

The staff of the Immune Deficiency Foundation set an ambitious fundraising goal of $1,000 in honor of Primary Immunodeficiency Diseases Awareness Month, and they surpassed their goal, raising $1,158 for IDF. The enthusiastic group contributed to multiple activities throughout the month of April.

IDF staff raised $1,158 during Primary Immunodeficiency Diseases Awareness Month.

The staff created personal fundraising pages on the Take the Zebra Challenge section on the IDF website, soliciting friends and family members for support while also making personal contributions.

Click here to learn how to make your own IDF fundraising page today!

They turned Casual Fridays into a fundraising event by paying to wear jeans every Friday in April. They participated in a raffle and book sale. One staff member conducted a Join the Herd! Event, displaying THINK ZEBRA! cutouts prominently behind her desk.

Join the Herd! is a simple fundraising event that is perfect for offices, stores, schools and other places with heavy foot traffic. Click here to learn more about IDF’s Join the Herd!

IDF’s Strikes for Stripes, staff bowling fundraiser, was held April 30.

To wrap up the month, the staff displayed their strong bowling skills at Strikes for Stripes, a bowling fundraiser held April 30.

All month long the staff devoted time and money to fundraising.

Thank you to all staff and all those who supported their efforts!

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By IDF_Kara – May 7, 2012

Cake Walk at Shelton School in Dallas,TX Raises $5,000

Anna Wojciechowski inspired her Student Council to raise funds for IDF through the school’s annual Cake Walk.

Student Council dedicated The Annual Cake Walk at Shelton School in Dallas, TX to one of their own, Anna Wojciechowski, a patient with a primary immunodefiency disease (PIDD). The Student Council chose to dedicate this year’s Cake Walk to Anna and raise funds for the Immune Deficiency Foundation (IDF) through the THINK ZEBRA! campaign.

The council solicited local businesses and members of the community to donate cakes, and students paid to participate in the walk and have an opportunity to win a cake. They marched along a numbered path, similar to musical chairs. A number is called out, and the person standing on the square with that number wins a cake.

The event raised more than $5,000, which, according to Anna’s mom Erin, is the most money the school has ever raised during their annual Cake Walk.

Thank you, Anna and Shelton School!

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By IDF_Kara – May 7, 2012

Childhood Friend Inspires Senior Project about PIDD, $600 Raised for IDF

South Carolina resident Heather Gage focused her senior project on childhood friend Kaitlyn Moseley, who was diagnosed with a primary immunodeficiency disease (PIDD) when she was three years old. Heather and Kaitlyn, who were born a day apart in 1993, spent their early childhood together, attending the same church and the same daycare. Kaitlyn, however, was frequently absent from daycare due to her chronic illnesses. Heather remembers missing her friend and wondering why she got sick so often. Heather grew up and learned about Kaitlyn’s diagnosis. The girls, now seniors in high school, remained good friends.

When Heather had to choose a senior project involving community service, she chose Kaitlyn and PIDD. She interviewed Kaitlyn and her mom, Xan, and researched the diseases for a paper and presentation, to be given to a panel of her teachers. She even organized an auction, held March 17, 2012, raising $600 for the Immune Deficiency Foundation (IDF) through the THINK ZEBRA! campaign.

Xan and Kaitlyn attended Heather’s presentation and spoke about life with PIDD and their involvement with IDF. Xan explained that IDF is a “wonderful” resource for families living with PIDD. The family attended their first IDF Family Retreat in 1998 and has been actively involved in the Foundation ever since. Xan has helped with numerous IDF events, and in 2008 Kaitlyn became a member of the Foundation’s Teen and Young Adult Council, serving as a leader for her peers. The mother and daughter also discussed how people can help patients like Kaitlyn through plasma donation and THINK ZEBRA! fundraisers.

Heather concluded her project by writing an article for a local paper, Great Falls Reporter. She thanked those who supported her auction and explained the importance of PIDD awareness. “Even though this condition may not be as prevalent as others,” explains Heather, “that does not make the disease any less important. Raising awareness is essential in helping further knowledge and research available to help people like Kaitlyn.”

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By IDF_Kara – May 7, 2012