We are moving right along!
1) We have two more members on our Board, making a total of four of us now.  Yay!!
2) We have a possible attorney connection to help us with filing for our non-profit status, thanks to an old and dear friend.
3) Katie of Little Angels Service Dogs has agreed to be our service dog partner to help other IH'ers get the service dogs they need.
4) The Global Genes Project is going to share Kathi's story next month and include a link to The IHope Foundation's facebook page
5) Kathi is in the local newspaper today and her starting a foundation is included in the story of her trying to get a service dog.  :)  Once she has her dog, we'll be able to really get going on raising funds for the foundation.  Our personal finances will always be separate from the foundation, but we don't want anyone ever getting the wrong idea.  We don't want things to get muddled, you know?

Oh!  And Monica of TG Bears is designing a Kathi Bear for us (she named it after the founder of the foundation; how cool!).... $20 from each Kathi Bear sold will be donated to The IHope Foundation.  She says once we're ready to start fundraising just let her know!  Her bears are so cute and cuddly, and very well made -- we're honored that she's making a charity bear for our foundation!  And we're in talks about making an option for people to donate toward a Kathi Bear to send to an IH'er in the hospital or who's having a particularly hard time with IH symptoms.  This could get pretty exciting!

Lastly, Sandy of Jewels for Hope has offered to design a charity bracelet for us, with proceeds from each The IHope Foundation bracelet being donated to our foundation!  Her jewelry is just stunning and she has a limited number of charities that she can support, so we are very blessed and grateful that she has chosen us!

~ Pia

We have spent the past couple of weeks fine tuning our Mission and beginning the formation of our leadership team.  The completed Mission can be found HERE.  

Oh, and we tweaked the logo once more -- adding "Cure Intracranial Hypertension" to it makes our ultimate goal clearer, don't you think?

From all of our discussions about this foundation, Kathi and I have come to the conclusion that we are, first and foremost, a Patient Advocacy Group (thank you, Global Genes Project for introducing us to this term!) and this informs our every move.  The most important thing we can do is speak up for IH patients, giving them a voice -- and a face.  That is why raising awareness of IH is our first goal.  We know from our own experience that people tend to care more about causes that are personal -- where the public can get to know the people they are supporting -- and we (Kathi and I personally) love to learn more about the individuals affected by these diseases so that we can keep them close in our hearts.  So we have a tab here called, Meet Our IH Families.  We will ask members of the IH community to introduce themselves or their IH children so that our supporters will have a chance to meet (if even just in an article) these beautiful people who suffer so greatly from such a debilitating disease.

~ Pia

An Updated Logo

Kathi sketched her initial design for the foundation's logo as soon as we got home from the Patient Summit on September 28th.  I loved the freeform, carefree look of it but Kathi wasn't satisfied; she insisted that she needed to clean it up. Well, it's her foundation and her logo so I sat back and let her play with it all she wanted.  In the meantime, we also sought the advice of a friend who has experience working with logos.  This friend suggested that the font for the words framing Kathi's logo be changed to something more professional looking.  I have to give Kathi kudos here, because she loved that font.  It wasn't easy for her to let that go.  But she worked at the logo and the font and came up with this one:

We're both quite pleased with the result!  She tried different variations -- no outlines on anything, outlined letters only, outlined everything, blue first then green, green first then blue....  She worked hard to convey the brightness and hope that's inherent in her vision for the foundation.  I think she nailed it!  

She then added her tagline.  This is a keeper!  

~ Pia

Learned Something

I found a blog today that addressed the issue of copyrights on photos that are on the Internet.  Basically, the gist of the article was that bloggers should only use photos that either we take ourselves (and therefore belong to us) or are designated as common license photos.  Otherwise we could get sued by a photographer who takes issue with his/her photos being used in our blog.  Even if we link back to the original website and give credit for the photo, we could be sued.  And we could lose.  Which means hefty fines that we can't afford.  

We want to do this whole foundation the right way; the fair way; the honest way.  So I have removed the photos and links that were previously in our blog that were not common license or didn't belong to us.  Tomorrow, Kathi and I are going to start carrying our cameras wherever we go and actually using them to take photos that might one day end up on our blog.  Pretty much anything out there is fair game and potentially photo-worthy: a stop sign, a fire hydrant, a doorway.... and of course, sunflowers.  Lots and lots of sunflowers.  :)

So Kathi's charging her camera battery tonight.  And tomorrow, our photographic quest begins!

~ Pia

Sunflowers!

Kathi LOVES sunflowers.  Just seeing them makes her heart happy.  So when we started talking about logos and visuals for her foundation, the sunflower naturally came to mind.  We wanted to have the IH ribbon as well, since this is an IH-specific foundation, so combining the two was sort of a no-brainer.  Pardon the pun.  Kathi sketched the idea as soon as we got home from the Patient Advocacy Summit, colored it in, et voila!  Her logo was born!

Sunflowers traditionally follow the movement of the sun across the sky.  If you drive/walk/ride by a sunflower field, stop by a few times throughout the day.  You'll see that their flower "faces" turn toward the sun.  They start out facing one direction at the beginning of the day and end up facing the other direction by the end of the day.  Wherever the sun is, that's where they're "looking".  It's so cool!  Kathi's the same way.  She follows the sun.  No matter what's going on in her life, she looks toward the bright side of things.  Even when she's in incredible pain or nausea, she finds a reason to smile.  Nothing brings this girl down! 

If you're Christian, the sunflower analogy has an added meaning: that of following the Son.  We are Catholic Christians.  We follow the Son of God in all things.  Like the sunflowers, we keep our faces turned toward the Light and keep our eyes and hearts fixed on Jesus.  This has helped us to keep an attitude of hope throughout the past almost-three years, and has given meaning to Kathi's suffering.  She offers up her pain and discomfort for people in need of prayer.  This way, her suffering is redemptive.  It has purpose.  She has purpose.  Faith is a beautiful gift, and keeping our eyes on the Son is the best way we've found to live with the challenges that IH has brought into our lives.

So....... sunflowers everywhere!  :)

~ Pia

So It Begins

Next month, it will be three years since Kathi was diagnosed with Intracranial Hypertension.   Over the past three years, we've been on a roller coaster of sorts, with ups and downs, twists and turns, long drops, and definitely a few loop-de-loops.  After the initial shock of the diagnosis, we -- like all families -- immersed ourselves in research.  We read everything we could get our hands on, searched the Internet for any little tidbit of information, and talked to as many people as we could to try to learn whatever we could learn about what exactly this journey would be like and if there might be an end in sight.

What we found out was that there's only ONE research facility in the entire world that studies Intracranial Hypertension.  ONE.  Thank God for the Intracranial Hypertension Research Foundation (IHRF) and all that they do for IH families!  We learned that IH is a RARE disease -- 1 in 100,000 people worldwide are diagnosed with it.  We learned (the hard way) that because IH is one of those "invisible" diseases -- people who have it don't often look sick and every test/scan comes back "normal" -- it's difficult to get help when you need it; people tend not to believe you when you explain your symptoms; medical professionals often misdiagnose you and prescribe incorrect/ineffective treatment protocols (migraine meds, anyone???), leading to months and sometimes years of suffering before an accurate diagnosis is even made.

Kathi was blessed to have had a doctor in her Urgent Care facility that knew something about headaches.  We credit him, by the grace of God, for Kathi's fairly quick diagnosis.  If not for this doctor, we might still be floundering in the sea of medical mystery.  Instead, this doctor suggested she might have IH and then confirmed it when Kathi had her first spinal tap/lumbar puncture (LP) in November 2009.  While we were elated to finally have a diagnosis after months of screenings and ER visits and pain, we were quickly brought back down to reality by the fact that so little is known about this disease.  We had doctors after that first one tell us that the diagnosis was wrong -- that Kathi can't have IH because she doesn't fit the stereotypical profile -- and other doctors tell us that the initial diagnosis is absolutely correct.   Thanks be to God Kathi now has a medical team that believes her and is working with her to relieve the pain and symptoms as best they can.  There's no cure for IH.  There's no treatment specifically for IH.  There are meds that we use that are meant for other diseases and there are procedures to help the symptoms, but nothing to treat the root of the problem.  Yet.

Feeling alone in our IH cocoon, we looked and looked and finally found a few Facebook groups related to IH and joined those, grateful to find a community of people going through the same struggles that we are going through.  In addition to these IH-specific groups, we found rare disease networks on Facebook -- the Global Genes Project to name one very influential network.  We signed up a year or two ago for the Global Genes "7,000 Bracelets for Hope" campaign and received beautiful bracelets in the mail, made by people who want to support those in the rare disease community.  We felt so loved!  From there, we decided we wanted to give that feeling of support to others.  but we weren't sure exactly how.  We started slowly, looking for groups to work with, eventually taking an active role in the leadership of a couple of the Facebook IH groups -- we were excited to finally be able to be PROactive in this fight rather than just having to REact to what was happening to Kathi.  

This past Friday, Kathi and I attended the Rare Disease Patient Advocacy Summit hosted by Global Genes.  We met others who are raising awareness for rare diseases as well as professionals in the pharmaceutical industry and representatives of financial institutions who fund advocacy and research worldwide.  We learned from leaders of grassroots Patient Advocacy Groups about how they started foundations not only to raise awareness for their rare diseases but to fund gene research to find a cause for these diseases, to connect with pharmaceutical companies to find/create drugs to treat these diseases, and more.  Most of all, we learned that we can make a difference; we can do something to help sufferers of IH; we don't have to stand back and let IH run our lives.

So Kathi and I talked about everything we learned, what we've been through together over the past three years, how she wants to help her fellow IH'ers, and what she feels called to do.  We hit upon starting The IHope Foundation.  Kathi has definite goals for this foundation, plans for how she wants to proceed, and what kind of help she wants to offer the IH and rare disease communities.  I'm excited to be on this next leg of her journey with her.  I'm proud that she is taking charge of her disease and fighting for others beyond herself.  And I think, somehow, three years is the perfect milestone for her to begin.  So here we go.  We invite you to come along for the ride and work with us.  In the coming days and weeks leading up to Kathi's 3rd "D-Day" (Diagnosis Day) anniversary, we'll be unpacking our mission for you here and getting everything in order so that we can unveil the new foundation.  Our goal is to have a grand unveiling in November.  That's a tall order, but we're determined.  We hope you'll join us.

~ Pia