Heather's Campaign for 4p- Support Group
Tax deductible
Friends, match my gift! Help me support people with 4p- and their families by enabling them to attend the 2020 National Conference!
You probably already know some of this story: In 2011, our then-four-month-old daughter Fiona was diagnosed with an ultra-rare condition called Wolf-Hirschhorn syndrome. We learned that one in 50,000 babies is born with the syndrome. We learned, in short, that not only was our kid very rare, but so were our lives. Our parenting road would look almost nothing like those of our peers.
That first year was lonely.
When Fiona turned one, we found out that a national conference for her syndrome was being held just across state lines. But we were also in a precarious financial situation. Justin's temporary job was over, and my contingent faculty gig didn't pay nearly enough for a family to live on. We figured we couldn't afford to attend the conference.
And then I got an email. The 4p- Support Group, which organizes the national conference, was generously gifting us with a few hundred dollars to cover our hotel room. And so, off we went, from Ohio to Indiana, to meet dozens of kids with our daughter's same syndrome, and dozens of parents who loved and supported them.
Attending that conference was revolutionary for me. It entirely changed the way I saw not just my daughter and her syndrome but also disability in general. (I wrote about the first conference here and the second one here .)
Afterward, I vowed to do what I could to support the 4p- Support Group .
[Fiona, smiling in a butterfly headband. She's 3 years old at her second conference.]
So, when in 2017 I signed a contract with Penguin Press to write a book about raising Fiona, I vowed to dedicate a chunk of the advance to the 4p- Support Group. Specifically, I vowed to donate money so that parents could receive financial support to attend the national conference, just like Justin and I had.
Here's what the conference does for families:
+ It puts them in touch with national experts on a syndrome so rare most pediatricians have never even heard of it.
+ It helps those families navigate the medical needs of their kids in ways that could very well be life-saving.
+ It puts them in touch with other families like theirs, so that their beautiful and difficult lives are normalized and so they have companions on a very unique--and sometimes isolating--road.
+ It celebrates the diversity and beauty of people with 4p-, and honors their humanity.
+ It throws a freaking party. With wedding reception style seating and live music and dancing!
Will you help me donate to the 4p- Support Group so that families in need, families who otherwise couldn't afford it, can attend the 2020 National Gathering?
Will you match my gift?
Will you maybe even blow me out of the water?
You probably already know some of this story: In 2011, our then-four-month-old daughter Fiona was diagnosed with an ultra-rare condition called Wolf-Hirschhorn syndrome. We learned that one in 50,000 babies is born with the syndrome. We learned, in short, that not only was our kid very rare, but so were our lives. Our parenting road would look almost nothing like those of our peers.
That first year was lonely.
When Fiona turned one, we found out that a national conference for her syndrome was being held just across state lines. But we were also in a precarious financial situation. Justin's temporary job was over, and my contingent faculty gig didn't pay nearly enough for a family to live on. We figured we couldn't afford to attend the conference.
And then I got an email. The 4p- Support Group, which organizes the national conference, was generously gifting us with a few hundred dollars to cover our hotel room. And so, off we went, from Ohio to Indiana, to meet dozens of kids with our daughter's same syndrome, and dozens of parents who loved and supported them.
Attending that conference was revolutionary for me. It entirely changed the way I saw not just my daughter and her syndrome but also disability in general. (I wrote about the first conference here and the second one here .)
Afterward, I vowed to do what I could to support the 4p- Support Group .
[Fiona, smiling in a butterfly headband. She's 3 years old at her second conference.]
So, when in 2017 I signed a contract with Penguin Press to write a book about raising Fiona, I vowed to dedicate a chunk of the advance to the 4p- Support Group. Specifically, I vowed to donate money so that parents could receive financial support to attend the national conference, just like Justin and I had.
Here's what the conference does for families:
+ It puts them in touch with national experts on a syndrome so rare most pediatricians have never even heard of it.
+ It helps those families navigate the medical needs of their kids in ways that could very well be life-saving.
+ It puts them in touch with other families like theirs, so that their beautiful and difficult lives are normalized and so they have companions on a very unique--and sometimes isolating--road.
+ It celebrates the diversity and beauty of people with 4p-, and honors their humanity.
+ It throws a freaking party. With wedding reception style seating and live music and dancing!
Will you help me donate to the 4p- Support Group so that families in need, families who otherwise couldn't afford it, can attend the 2020 National Gathering?
Will you match my gift?
Will you maybe even blow me out of the water?
Organizer
Heather Lanier
Organizer
Pitman, NJ
4P-Support Group
Registered nonprofit
Donations are typically 100% tax deductible in the US.
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