Thursday, January 11, 2007

Update as of Thursday 11, 2007



Hello Everyone,

Today is Maria’s 7th birthday and we thought the perfect day to announce the establishment of our new nonprofit organization, the Prayers From Maria Foundation (see: http://www.prayersfrommaria.org/ ).

There aren’t many people who realize that pediatric gliomas are the second leading cause of cancer deaths in young people and 85-95% of these children die within the first five years of diagnosis. I had never even heard the word “glioma” before Maria.

After Maria’s diagnosis, Ed and I frantically searched medical journals, books, articles and the Internet for any sign of hope that we could cling to that might possibly save our daughter’s life. What we uncovered was that childhood glioma (brain tumor) research was grossly underfunded, and there was no organization acting as a clearinghouse or translator of the state of research for newly diagnosed families. There is simply not enough being done to find a cure. It is unacceptable for a child who is perfectly healthy one day to be told that she has months to live the next.

As a mother I can’t rest in my heart knowing this information and knowing that I have the ability to do something about it. Ed and I have continuously thought about our role in the midst of this. We have tried to open ourselves to God’s plan and how we are to participate in it. I believe many successes have come about in medicine for the betterment of all because those who have been personally touched by an illness have decided not to sit on the sidelines, but to do more.

The Prayers from Maria Foundation is charged with funding research into a cure for childhood gliomas, and to advocate for families with such conditions. Initially, it is our goal to gather enough funding to provide grants to research institutions that can demonstrate how they plan to best use the money to find a cure for this child-killing disease. Eight of the very best doctors and biomedical researchers in this area have agreed to be on the foundation’s advisory board. Based on their knowledge and the research that the foundation will fund, we plan to create a destination for newly diagnosed parents to access the most up-to-date information regarding glioma research and options for treatment. Eventually, it is our goal to offer financial assistance to parents without the means to get the best treatment available for their child.

With these ambitious goals, fundraising will be a major concern. So many of you have generously reached out to us personally and for that we are so grateful. Ed and I will be transferring the balance of our Prayers for Maria fund to the foundation. We did not actively seek any funding in the past, but we now begin to do so for the foundation. While individual donations will be greatly appreciated, we will focus predominantly on two areas for fundraising, and can use your help: (1) corporate donations and (2) events.

First, we would appreciate any help in securing corporate donations. The Prayers from Maria Foundation is now established as a 501(c)(3) non-profit corporation, and we have an experienced governance board, as well as a top-notch advisory board in place. We have also established a grant proposal review process (modeled after the National Institute of Health) to make sure we fund only promising research that focuses specifically on childhood tumors.

Secondly, we have witnessed the power of the various events that were held in Maria’s name - from children holding bake sales to bikers riding in poker runs – and we plan to carry on with this type of activity to fund research. We will keep you posted about our upcoming “Kids Curing Kids” campaign, and we encourage you to help us think of events, hold such events, and perhaps volunteer your time.

If you are interested in volunteering, making a donation, or finding out more please visit http://www.prayersfrommaria.org/.

On our website, we post various children affected by some form of glioma. These are beautiful children you’d see next door. As we worked on the site we had to keep updating that section as children continued to pass away on a regular basis. This is the harsh reality of gliomas. We have to stop this from happening.

Thank you again and again for all of your love and support.

Love,Ed and Megan

33 comments:

Anonymous said...

What a wonderful gift for everyone on this special day. Happy Birthday to Maria. We have been thinking of you all day and hope you are filled with laughter and love today.

The Londino Family

Anonymous said...

Happy Birthday Maria! Hope you have a day that is as special as you are! God Bless You.

The Duban Family

Anonymous said...

Ed and Megan,

Your Foundations is unbeleiveable. The website is great! You are two of the most remarkable individuals that I have come across in my 35 years. Not only are you dealing with Maria's horrible disease, you are trying to raise awareness and support for others. You truly are Saints on Earth. Maria is lucky to have such wonderful and caring parents.

I will continue to pray for Maria and your family.

Kathy

Anonymous said...

HAPPY 7th BIRTHDAY, MARIA!

Congratulations on the birth of the Prayers From Maria Foundation! It is truly inspiring all that you do for Maria, but even more so as you pave the way to help other children and families that are and will go through what you are experiencing. I pray for the ultimate success.

Waiting for you to put me to more work!
Blessings,
Betsy

Anonymous said...

Happy "7th" Birthday Maria! I hope your day is filled with magic!

Ed & Megan,
My daughter Heather, has sent your prayer requests from the beginning of your ordeal with Maria! I too am amazed at your determination in not only dealing with your own daughter, but now you are reaching out to so many others with your foundation.

You are a blessing to this world!

My prayers will continue to be with you all!

Marilynn Rowe

Anonymous said...

God bless you Maria, on your birthday and forever.

Anonymous said...

Happy Birthday Maria!

You don't know me, but I check your site regularly. I am a friend of the Lipski family. I pray you have a blessed day with your family and friends.

Yvonne Koubek

Anonymous said...

What a WONDERFUL thing you have done with creating this foundation! Outstanding! You will be helping so many people. What lovely people you are.

Bless you all!

Anonymous said...

The foundation website is beautiful, so perfect. I'm so amazed and proud of you guys. I will work with my Corporation to have the foundation added to our list of charities that our company will match contributions. I'm also so proud to see Uncle John on the medical board. Since I was a little girl, I can remember him saying he wanted to find a cure for this monster. God Bless You today on this very Happy Day!

Anonymous said...

Hi Maria!
HAPPY BIRTHDAY TO YOU!
HAPPY BIRTHDAY TO YOU!
HAPPY BIRTHDAY, DEAR MARIA!
HAPPY BIRTHDAY TO YOU!
I just wanted to wish you the BEST birthday! Your cake is going to be full of candles. Make sure to make a birthday wish!
We all love you!
Love,
Kati Corbitt

The Scalise Family said...

HAPPY BIRTHDAY MARIA. YOU ARE SO BEAUTIFULY HONEY. MAY GOD BLESS YOU AND KEEP YOU SAFE!

What an awesome thing you've done by creating such an organization. The love we have our children is far beyond explanation and we feel as though our love for them can move mountains. God Bless your family. I would love to help in any way. You are in our prayers always.

GOD BLESS YOU,
THE SCALISE FAMILY

Anonymous said...

Happy Birthday Maria!!! I think about you and pray everyday. I hope your day was filled will much joy and laughter. Keep smiling for you are an inspiration for all of us.

God Bless,

Kevin
Rocky River, OH

Anonymous said...

I hope that Maria had a wonderful birthday filled with happiness & love. You don't know us but, my entire family (and it's big!) pray for Maria every day. I hold my children a little tighter each day because of Maria.

Just hearing her story has touched my life in such a way that I will never be the same. I wish you all the best in your foundation & we will do what we can in donations to St Jude's, always keeping your daughter in mind. I wish your family many blessings & really admire your faith in God.

Anonymous said...

Happy 7th Birthday Maria, I hope you have a wonderful day.

Please know that my family thinks of you all the time and prays each night for God to grant the miracle of healing to all the children, including Maria.

The foundation looks great, I am sorry to see Dr. Kieran on there from Dana Farber. We didn't have a good experience with him while Matthew was being treated. I'm glad that you a better experience with him. Thanks for having Matthew up on your page, it means the world to me that you recognize him, we have had Maria link on Matthew's web page for a while.
May all your hopes and dreams come true in 2007.

God Bless.

Rich McGowan (Matthew's Dad)

Anonymous said...

Happy Birthday Maria! We want to let you know that you and your family are in our thoughts and prayers.

The foundation looks great. Please let us know if there is anything we can do.

JJ, Jim, Diana, Nikki & Matthew

The Hutton Family said...

God Bless you both for recognizing the desperately needed funding for childhood cancer research. My husband & I founded the non profit charity 'Parents Against Cancer' in 1997. All funds go directly to the research efforts being conducted at Texas Children's Cancer Center in Houston. Most people don't realize how very little of their donations to some charities benefit research. Prepare yourselves for the hardest yet most rewarding thing you will ever do.
You remain in our thoughts & prayers

Laura and Chris Lawlor said...

Happy Birthday Maria!

Ed and Megan, let me know what I can do to help. I may not have the medical knowledge like Chris and the other advisors but I don't mind doing the grunt work... let me know what I can do and I will do it! We are always here if you need us.

Love, Laura and Chris

Anonymous said...

Happy Birthday Maria! I wish everything for you today tomorrow and always Keep Smiling that beautiful smile.

Ed & Megan
I don't know you or your family personally but I've been following along. My thoughts and prayers are with you and your beautiful family.

Deb and Ted Gordon said...

Dear Megan and Ed,
Sitting with Maria at church was a great way to start the New Year! She looked great and was nothing more than a typical 7 year old drawing pictures and hugging mom!
For a brief moment, Father Tim looked over and I knew God was at work. In the Gospels, Jesus works miracles either to elicit faith or—more often—as a response to an individual's faith in him. Both examples have been so evident in your postings about Maria and in the responses you have received. I was once told to move out of God's way and let him do his work. We continue to believe and pray that God will work over time and Maria will be healed. Please count on us to take part in the foundation. The one thought always in the back of our mind is how do parents network and find resources when they are given the news that their child is ill? It's a wonderful thing you are doing and you can count us in!
Love,
Deb, Ted and Teddy

doodoobug said...

Hello,
I was thinking of Maria this morning and that dreaded tumor. I was just on Kayla Lucius' web page and she has just received great news that her tumor is shrinking. I am telling you this because her parents are doing a daily laser treatment and that is also working for another child. I hope this helps you, so if you get a chance go to jj's miracle page and then to other kids to see Kaylas posting. I hope the best for Maria in 2007.
Trina

a classmate from St. Raphael said...

Happy Birthday Maria! What a gift
you are! And, what a gift you and
your family have given to the world!
As a parent, our single most important role is to raise our children in a way that we all make
the journey to our loving Father
in Heaven one day. Whether our journey on Earth is many year or a few...the destination we HOPE for is the same. No matter what tomorrow holds - Megan and Ed... and beautiful Maria - your passage to Heaven is surely guaranteed and how blessed those of us are... whose path has come across yours.
May God continue to bless you
with peace and joy - you are
AMAZING!

The Nativio's said...

Hi Ed And Megan, and blessings to Maria and Happy Birthday too! I was thinking about how good it is that you two stay positive for Maria. Kids don't need to know the dark side of things so young. We teach faith and goodness to our children by our examples and it does help them to enjoy childhood and experience security. From personal experience it formed an acceptance to myself and I had a tragic accident as a child but my parents discussions with the Dr. was private and I never new how bad I was so therefore I was ok. That not only gives me strength to this day but adoration for my parents who sacrificed for me. And so cuddos to you both, we are praying of course and glad to hear she is coping with school and things children need. Extra prayers for strong shoulders for you two and congratulations on the foundation it sounds like what this world needs. Love to all.
Brigid

Beth said...

A happy belated birthday to Maria! It is the world though that has received a gift given by your parents on your special day. God bless you Ed and Megan for starting a wonderful foundation to make a difference for generations to come. I continue to pray for Maria and children everywhere like her fighting cancer.

Scott DuRussel said...

Hello Ed and Megan,

My name is Scott DuRussel. My son Joshua is 7 and has a DIPG. Dx was on June 30, 2006 - the day our lives ended and a new lifestyle started. He and his older brother just had just celebrated their birthdays (both in the end of June).

We have spent the last 6 months as I am sure you have, trying everything in our power to make him better. Lots of research, sleepless nights, and tears that we can never get back. I want to just die for him and get this whole thing over with.

Josh is now very weak. He is in a wheelchair and is pretty much dependant on my wife (Leesa) and I for everything.

We are seeing Detroit Children's Hospital for the urgent care needed, but fly to Texas for MD Anderson for specialty care about once a month. We see Dr. Johannes Wolff. He has worked on nothing but this tumor for the last 10 years. His number is: 713-792-6610. The Nurse you will talk to is Nicole or Collette. They are in the Pediatric Treatment Center at MD. Dr. Wolff is very Knowledgeable, and will answer your questions whenever possible. If he can't, he will find someone who can.

Please email me at s_durussel@yahoo.com for more information.

I tell everyone that says that they "know what we are going through, my dad had cancer" NO YOU DON'T! But, I and my wife do know just exactly how you feel since we are in the very same boat - rowing with only one paddle it seems. I wish we could get upstream and fight this thing better, but it seems to be pushing us toward the waterfall. We still have HOPE though... We too don't know God's plan, but we are not giving up on Josh.

Please write me and we can start to talk back and forth.

Bless you and yours,

Sincerely,

Scott DuRussel
F/o Joshua DuRussel

Anonymous said...

Happy Belated Brithday to Maria. You are in my heart and in my prayers regularly. This is late because we were in Michigan with our youth group. Many prayed for you.

Love,
Aunt Pam

Anonymous said...

Hey Maria, Happy 7th Birthday! We are delighted that you are feeling well, and are hoping that soon you and your mom and dad and brothers can come for a visit down here in Sanibel!!

Love, Your Great Uncle Pat, Cousins Nora, Tom, Brynna,and Fiona

Anonymous said...

Maria and family- Happy Belated birthday! I have been thinking about you. I hope you are feeling good. My love and prayers are with you. Love, Justis

Anonymous said...

Just wanted to say Hello and let you know that you are all in our thoughts and prayers every day & night. I am amazed at your strength, even when you think it is not there. I am in awe at you both and I hope you feel the love surrounding you and your beautiful children always. I am here for you now and always. As I look again at Maria's picture from the Update of January 8th I can't help but smile and think "SUPERSTAR"! As She Is! God Bless, Love, Rosaleen

Anonymous said...

Hi, my name is Gina Williams and my 7 year old daughter, Brooke has DIPG also. I saw her picture on your other site. I have been checking on Maria everyday hoping she is doing better. I hope everything is okay. I am praying for you. With love, Gina 1/24/07

Anonymous said...

Hi you don't know me, but I found out about your daughter's site from another site. I just wanted to say that i'm so sorry about the news that you recieved about your daughter on your last dr's visit. Hopefully she will pull through this. I will be praying for your daughter.

Anne and Ted Smith said...

Ed and Meghan,
We had Ed and Arlene here last night and wanted you to know our family prays for you all. We are so moved by your unwavering faith and can truly see God working through your beautiful family. Ed, your parents are so proud of you both- and so are we. God bless you and know how much we in Rochester care. love,
Anne and Ted Smith and family
Olivia, Maggie,Katie, Sarah, Jay and Caroline

Anonymous said...

Maria and Family,

Just Stopped in to send some
prayers and HOPE!

Always in my heart and prayer
Liz Smout, Colby's Aumt

Mike Busch said...

Maria,

Happy Belated Birthday! I was bummed that I couldn't make it to your party. Max said it was awesome. He said your dad was really funny. I'm not surprised. You have great parents. Say hi to Eddie, Aiden and Blake for us. I hope to see you soon.

Love,

Mr. Busch
(and Mrs. Busch, Max, Anna, Elli and Alex)