Merry Christmas, everyone!

We've been busy little bees over here, working hard to get our little foundation off the ground..... such exciting stuff going on!

1) Our Articles of Incorporation have been written, approved, and sent to the Secretary of State.  We should soon be on our way to officially becoming a nonprofit!

2) We've found some wonderful people from a couple of IH awareness Facebook groups -- we'll be adding their group info to our website along with links.

3) We received our first Meet Our IH Families questionnaire response and will introduce that lovely lady to you in the next few days.

We're looking forward to 2013 with great hope and joy, and we hope you are, too!

~ Pia

Cleaning the Sink

One day when I was younger, I did the dishes totally on my own -- with no prodding from anyone.  Yay, me!  I was pretty happy with myself for being so "unselfish" and "thoughtful" so I told my mom what I had accomplished (I wasn't very interested in humility at that age).  Her response: "Did you clean the sink afterward?"  Hmmmm..... not exactly the pat on the back I had been looking for.  And of course, I don't think I had done that part.  Rats.  Back I went to clean the sink.  Ever since that day, whenever I get almost done washing the dishes I think of my mom.  Her question echoes in my ears until I actually do clean the sink.  Only then do I consider myself done with the dishes.  

As I was washing dishes today, the same thing happened.  Only this time, there was a second part to it.  I realized today that my mom's question was a prompting from her to finish whatever I start.  It was a reminder that any job half done is not a job well done.  And then I started thinking about the areas in my life where a job well done is the only acceptable kind of job there is.  You know, some things you can do and as long as they're mostly done and you gave it your best effort it's no big deal -- even if they're not really "well" done.  These are things like making the bed (who's going to see it besides me, anyway?), folding my laundry (I can iron whatever is beyond the wrinkle limit right before wearing it), and parallel parking (if I'm pretty close to the curb and my car is reasonably straight, I'm good).

Some things, though, just have to be well done.  Take, for instance, all the things I have to do about Kathi's IH issues -- doctor appointments to make and follow-up on, records to keep, research to.... well.... research.  I can get a specialist to make a referral to another medical professional but if I don't follow up on getting the authorization from the insurance company so Kathi can actually get the appointment, what good was the referral?  I can get Kathi to the ER to be seen when she needs it, but if I don't give them the history on her IH and information on her current symptoms, they can't do their job well enough to give her the help she needs. I can rant and worry all I want that there is no cure or adequate treatment for my daughter's rare disease, but if I don't do my part to help raise awareness and educate people and talk to the doctors on my daughter's behalf, then the chances of actually finding that cure or adequate treatment are that much slimmer.  In all these things, I have to be diligent and follow through to the end of the job.  

It's not enough to just do the dishes; I need to clean the sink.  

So as much as I hated to hear my mom's question at the time that she asked it, I'm grateful to her for it now.  It's funny what we remember from our childhoods; what sticks and can be applied to our adult lives.  Thanks, Mom, for knowing what I needed to hear and having the wisdom to say it.

~ Pia

Happy Anniversary

From flower to seed to new life

As you may know, November marks the 3-year anniversary of Kathi's "Diagnosis Day".  We heard from another IH'er this morning that today is her 12-year Diagnosis Day anniversary.  I left her a comment wishing her a happy anniversary and sending her love and hope today.  Does that sound strange?  People celebrating (announcing, marking) the day that they found out they have a rare, incurable brain disease that will bring them constant, often excruciating pain for the rest of their lives?  I don't think so, myself.

I look at IH anniversaries as a chance to look back at all that has happened in the past year and say, "You did it!  You made it through another year and you are still strong!  You are still you!"  Break out the cake and pour the sparkling cider!  Toss the confetti!  You are here and you are beautiful!  That's a great reason to celebrate!  

IH changes your life.  I don't think I'm being overly dramatic when I say that IH ends your former life and births you a new one.  I've seen what it does.  I saw the life my Kathi led three years ago and I see how IH has taken that life away from her.  But I also see how it has given her something else in its place.  Kathi may not be able to run around amusement parks with abandon like she used to, but she is able to look into people's hearts and have compassion for them in a way far deeper than she was able to before.  She may not be able to dance around and sing like a rock star as often as she used to, but when she does sing, her songs are soulful and moving and filled with understanding.  She may not get to hang out with her friends in noisy malls or go to concerts with all the lights and crowds much anymore, but her gatherings with friends these days are more intimate events in small groups where they can really get to know each other and enjoy each other's company.

Such drastic change is hard, but it's not always empty of blessing.  For whatever IH has taken away, my girl has received something even better in its place.  Sure, she misses the old days.  So do I, for her.  But the new days bring their own delights, their own lessons, and their own joys, too.  IH can be a cruel disease, but it can also bring gifts that might not have been received otherwise.  

Celebrate an IH Diagnosis Day anniversary?  Yes!  This year and every year.  To our Facebook friend, Vickie -- HAPPY ANNIVERSARY!  You did it! You made it through another year and you are still strong!  You are still you!  Congratulations on 12 years.  We are united with you in love and hope.  Have a  great day!

How about all of you?  How has IH changed your life?  What blessings have you received in place of the things that you've had to let go?

~ Pia

Send a Message of HOPE

We designed a card of encouragement for Kathi's Facebook community, one that people can post on the Walls of those who need a lift.  The quote at the bottom is by Author Unknown... no one seems to know who originally said it, but it's been making the Internet rounds for quite a while.  We thought it was perfect for our little image.

IH can be such a painful, debilitating disease, especially when pressures are elevated and you just can't seem to find relief.  That's often exacerbated by extreme frustration when even your medical team can't find any way to help you.  Sadly, that's par for the course with IH.  IH'ers are strong people.  No matter their ages, I have repeatedly seen them look to the bright side amidst their suffering.  But sometimes, it all gets to be too much.  No one seems to understand, and those who do maybe get a little inkling of what they're going through are helpless when it comes to finding a source of relief for them.  It's during these times that having HOPE is absolutely necessary.

Kathi, on her 20th birthday (June 2012)

It's days like these, when all you want is just one day of being pain free.... one day of feeling healthy.... just one day of knowing what it feels like to have no vise clamping your head and your neck and your spine, that IH'ers are in danger of losing hope for ever getting better; that they risk sinking into a deep depression; that they need most of all to be encouraged and reassured that there are brighter days ahead if they can just hold on a little longer.  It's for days like this that we created the picture at the top of this post.  It's for days like this that can sometimes drag on into weeks and months that we want people to share the picture we made.  Share that message of HOPE.  Kathi lives by the motto that HOPE is neverending.  With hope in our hearts, we know that there is always a brighter tomorrow.  God promises us this, and we know that He keeps His promises.

We shared the IHope for You picture on Facebook and someone asked if they could order them.  We thought that was a great idea!  So we checked it out and arranged to have a batch printed as postcards.  We'll sell them on the foundation website (2 postcards for $1.00) so that you can buy some to send to people you know -- what a great, personal way to cheer someone up and let them know you're in their corner.  Thank you to Tammy R. for suggesting that we have them to order.  You are awesome!

Kathi with her cousin, Brady (August 2012)

Look for the postcards on our website in a couple of weeks.  Send a message of HOPE to people in your life who need it.  You might just put a smile on their faces and a giggle in their hearts.  Like these two.  They are full of life and hope!  I love them so much!

~ Pia

A Website Is Born and a Bear Has Some Fun

Our website is live at last!  There is still more to add, and it will be growing steadily as we continue to grow.

Kathi is working on a photo collage (possibly two) for the website.  If you'd like to be included, please email us the following:
1) a photo of you with something that inspires you
2) a photo of you with a sunflower
Send it to us at TheIHopeFoundation@gmail.com and Kathi will do the rest!

We're also working on a Meet Our IH Family section.  We have a questionnaire to send you if you would like to participate.  Just email us at TheIHopeFoundation@gmail.com to let us know.  We'll send you the questionnaire, then you send us the answers -- with a photo of you if you'd like.  We do hope you'll be part of this.  We would love for the world to meet our awesome IH family!

A little sneak peek of Kathi Bear's very first adventure!

Kathi and I took Kathi Bear on her very first adventure yesterday.  We had such a great time!  I think the people at the park thought we were awfully funny, with both of us giggling at each other as we posed Kathi Bear and took pictures wherever we found a great spot.  It was fantastic!  Kathi didn't feel well enough to stay long, but we got some great shots and we enjoyed our adventure.  Read all about it in The Adventures of Kathi Bear -- the post will be up in a day or two!

Lastly, Monica of TG Bears told us today that she just sent out the very first Kathi Bear order to a client in San Dimas, California!  Woohoo!!  We thank this wonderful lady for making Kathi Bear part of her family!  Maybe we'll get to see some photos and hear about her Kathi Bear's adventures, too!

~ Pia

Kathi Bear

Kathi Bear by TG Bears

Introducing Kathi Bear!  Our friend, Monica of TG Bears has created a cute, cuddly charity bear for our foundation! She used Kathi's logo and tagline, and incorporated them into a totally huggable stuffed bear that is just SO lovable!  Kathi chose white fur for her bear, and Monica stocks the softest fur.  Kathi Bear's paws are white suede, so that Kathi's tagline doesn't get lost in a fur forest.  And we were absolutely tickled that Monica added the blue-and-green (the IH colors) ribbon scarf AND a little sunflower!

Seriously.... how CUTE is this bear???

Kathi Bear is 16" tall and has jointed arms and legs.  She is just the right size for cuddling, and her stylish ribbon scarf helps her fit in anywhere from a country picnic to an elegant charity ball!

Kathi Bear arrived in a protective plastic cover, nestled in paper in a snug cardboard box.  She was traveling in style!  Monica always makes sure her handcrafted bears arrive in excellent condition, ready for loving!

I took Kathi Bear out of her box and sat her on the passenger seat for our trip to the mall to visit our favorite bear clothier, Build-a-Bear!  At 16" tall, Kathi Bear can wear so many of Build-a-Bear's fun outfits!  You can tell by this picture that the day was kind of grey and drizzly.... Good thing she was wrapped in plastic for this!

The first order of business was to get Kathi Bear this neat little red convertible that Kathi and I saw during a previous visit.  I just knew I had to get it for her bear!  I mean, it's almost a perfect replica of Kathi's own car. How could I resist?

This is the pic I showed the clerk,
so she could see Kathi's glasses.

A pair of eyeglasses was another must-have!  Ha ha, what were the odds they would have glasses just like Kathi's?  Awesome!!

The clerk at Build-a-Bear thought Kathi Bear was just too cute!!  She gave us (and I do mean GAVE) some blue and green ear ribbons to match her scarf and once we put Kathi Bear's glasses and ear ribbons on and sat her in her convertible, I knew her look was complete!   No need to buy any outfit this time, but there's always next time!

It was like torture waiting for the day when I could finally present Kathi with her Kathi Bear!  She had no idea that it was already being crafted.  As far as she knew, we were only in talks with Monica about the design.  When the day came to give her her surprise, the look on her face was priceless!!  I wish I'd had my camera ready!  Well, okay, I had my camera but she had bed head, ha ha.  Shhhh... don't tell her I told you!

Anyway, Kathi Bear is now ready for some serious exploring!  Check out The Adventures of Kathi Bear here on our blog to see where she goes and what she's up to!  Want to join the fun with your own Kathi Bear?  Click HERE to order yours -- the purchase price includes shipping to any US address and a $20 donation to The IHope Foundation -- then dress her up (or not), take some pics, and email them to us at TheIHopeFoundation@gmail.com.  You just might see your own Kathi Bear on our blog!

~ Pia

Our website is coming along nicely!  Can't wait for you all to see it!  When we publish, it will still be a work in progress -- meaning there's still lots of stuff to add -- but it'll be a good start.  :)  Trying to get it done by tonight because the Global Genes Project is doing a story on Kathi that's supposed to be published this week and the foundation is in it!  Sooooooo excited!

We've begun posting on the Facebook page, too, and on our Twitter feed.  We'd love for you to come Like and Follow us!  We'll return the favor!

~ Pia

Kathi had a great time at the Boutique!  She got to share her foundation info and hand out postcards explaining what we're all about.  Her brother, Rick, made foundation buttons to give away, too!  People stopped by with questions and Kathi had fun giving them answers (along with postcards and buttons!).  Lots of good contacts and a bit of a buzz generated -- it was a good weekend!

We're now working on the foundation website.  Hoping to have it up and live by the middle of next week!

Our friend told us that his son (an attorney in Santa Monica) has been speaking with another friend who has a nonprofit to help us get some advice on how best to proceed.  We're so excited!

And lastly, we received the notice in the mail last week that "The IHope Foundation" name is officially reserved for Kathi!  We have 60 days to secure it!  Awesome!!

~ Pia

Kathi has a booth at our church Christmas Boutique this weekend!  She'll have postcards and buttons to hand out that will introduce her foundation.  We're not an official non-profit yet (that's in the works), but she's determined to get started helping her fellow IH'ers by getting the word out about The IHope Foundation and how people can support us once we get going.  So this morning, we're busy writing up the marketing materials and then we'll print and assemble them tomorrow morning.  We are totally excited for this event!

~ Pia

Wow, it's our launch month already!  We are so excited!!  Our Board of Directors is shaping up nicely as we divvy up the responsibilities to make this foundation run as smoothly as possible.  We are so blessed to be able to work with the wonderful people God is choosing to participate in this!

~ Pia

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