Events...
You can now support the Isabella Rose Romano Foundation
by shopping at Amazon Smile!
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Amazon will donate 0.5% of the price of your eligible AmazonSmile purchases to The Isabella Rose Romano Foundation Inc whenever you shop on AmazonSmile.
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AmazonSmile is the same Amazon you know. Same products, same prices, same service.
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Support our organization by starting your shopping at smile.amazon.com.
Click the button below to sign into smile.amazon.com and choose our non-profit organization as the charity you'd like to support then everytime you shop on smile.amazon.com Amazon will donate .5% of your purchase to the Isabella Rose Romano Foundation!
News...
Care Packages Donated to the
Valley Hospital Butterflies Hospice Program
Oct 2017
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Yesterday Brianna, Isabella’s Big Sister, personally delivered 45 care packages to the Valley Hospital Butterflies hospice care program. The Butterflies hospice program is a program for families with Children in home hospice care and also includes the journey’s grief support program for siblings of the children in hospice care.
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These care packages were created with extra consideration of the siblings of the program in mind. Each gift was personally packed, by Brianna, and included a journal, art supplies, a stuffed friend and a hand written note from Brianna. This project had a great deal of meaning to Brianna and she managed the entire project on her own. She selected and ordered the contents of the gifts, with her own experiences in mind. When she was creating the packages, she intentionally chose to incorporate items that encouraged the therapeutic values of journaling and art and also wanted to create a gift that was for all ages. She hopes they will bring a small token of joy and comfort to the children who receive them.
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We’d like to extend a special thank you to Rose, from the Valley Hospice Program, for allowing us to donate to the program and for distributing the packages on Brianna’s behalf. We really appreciate her help in getting these gifts to these special families.
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Many thanks to all of our supporters who continue to donate to the Isabella Rose Romano Foundation. You make special projects like this possible and we hope to do more of these in the future.
RESEARCH GRANT UPDATE
March 2018, we provided a $15,000 research grant to the
“Children’s Brain Tumor Project” at The Pediatric Brain and Spine Center at Weill Cornell Medicine
March 2018
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We'd like to extend our gratitude to all of our supporters. Thanks to your combined generosity we were able to provide another research grant to The Children's Brain Tumor Project at Weill Cornell Medicine in the amount of $15,000. The CBTP is "powered by families" and we are proud to be one of many family foundations supporting this ground breaking research project dedicated to researching many types of high grade Brain tumors, such as Thalamic Gliomas, the tumor Isabella was diagnosed with. We have a great deal of faith in the advances the CBTP has made to date and we are delighted to be able to continue to support the project in memory of Isabella.
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RESEARCH GRANT UPDATE
January 2017, we provided a $10,000 research grant to the
“Children’s Brain Tumor Project”
at The Pediatric Brain and Spine Center at Weill Cornell Medicine
Jan 2017
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The Children’s Brain Tumor Project (CBTP), co-directed by Dr. Mark Souweidane & Dr. Jeffrey Greenfield, studies the rarest types of inoperable Brain Tumors, such as DIPG, AR/RT, and Thalamic Gliomas. In recent years the CBTP, through specific family funding, were able to launch the 'Thalamic Glioma Registry' allowing the project to gather information about thalamic glioma patients and further use that information to locate tumor tissue samples for research. With this information the CBTP is now in a position to begin work on what will be an ongoing ‘Thalamic Glioma Project’ –the first such effort of this type.
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The Children's Brain Tumor Project is "Powered by Families". The majority of all the funding they receive is from families, like ours, that know firsthand the need for this research and the importance of each diagnosed child's life. We are extremely excited to become one of the families that powers the CBTP with financial support, because the research they are conducting is as rare as the diagnosis and directly aligned with the goals we established for the Isabella Rose Romano Foundation. Our primary mission is to financially support the research of rare inoperable tumors, primarily thalamic gliomas.
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For those that don’t know, Isabella was diagnosed with a Thalamic Glioma in January of 2013, just 4 short years ago. A thalamic glioma diagnosis is extremely rare and only affects a handful of children each year. At the time when Isabella was diagnosed, if you had searched the internet in search of information regarding thalamic gliomas, you would find that the information returned was scarce, unreliable, and vague at best. As parents of a child that had this diagnosis, I can tell you that reality was extremely frightening. Today if you search for information on Thalamic Gliomas, the Thalamic Glioma Registry is the first website you will locate, filled with priceless information on the tumor, specialist, and family connections willing to provide parent-to-parent support. That in itself is incredible progress from 4 years ago.
The Isabella Rose Romano Foundation was created, with the primary mission of supporting ground breaking research towards better treatment options for children diagnosed with thalamic gliomas. In our opinion, the 'Children’s Brain Tumor Project' is on an impressive path to make great strides in this understudied and underfunded area of research. We are excited to be able to be a part of this type of progress and hope to be able to continue to provide these types of grants to the project in the future.
Most importantly, I'd like to thank all of our supporters who contributed to making this grant possible!
To learn more about the Children's Brain Tumor Project visit
childrensbraintumorproject.org
To learn more about the Thalamic Glioma Registry visit
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Mission Statement Update
Jan 2017
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Starting Jan. 2017 we have modified our mission to focus more on supporting research grants. Unfortunately, we have eliminated the individual family financial assistance support grants we had provided in the past. We are pleased that we were able to provide several families of pediatric cancer patients with some financial support, to leverage their unexpected medical costs. However, we find it difficult to continue those grants going forward. As we look to the future success of The Isabella Rose Romano Foundation, we want to ensure we remain in a position to continue to effect change and feel strongly the best way to achieve that mission is by streamlining our focus to funding the research for a cure of rare inoperable Brain Tumors! To see our updated mission you can visit the foundation website and click on the ‘Our Mission’ page.
$15,000 donated to Memorial Sloan Kettering Cancer Center to support pediatric clinical studies for patients with recurring brain tumors!
Dec 2015
On December 16, The Isabella Rose Romano Foundation had the honor of presenting it's first ever donation to support pediatric brain cancer research. With careful consideration we have chosen to provide $15,000 of funding to Memorial Sloan Kettering Cancer Center (MSK), specifically to support the funding for critical immune monitoring studies of pediatric brain cancer patients' response to a first-of-it's-kind Immunotherapy protocol being conducted under the supervision of MSK's pediatric oncologist Dr. Ira Dunkel MD.
Quoting from the MSK proposal for funds: "In 2015, approximately 4,600 children and adolescents in the United States will be newly diagnosed with brain and spinal cord tumors, known collectively as central nervous system (CNS) tumors. As a group, CNS tumors are the second-most common pediatric malignancy and the most prevalent solid tumor in children. Developing effective treatments for these tumors is arguably the major unmet need in the field of pediatric oncology."
The Isabella Rose Romano Foundation was created, with the primary mission of supporting ground breaking research towards better treatment options for these types of tumors. We have a great deal of respect and faith in the potential advances MSK could achieve with this study. We are delighted to be able to provide this financial support!
Most importantly, I'd like to thank all of our supporters who contributed to making this donation possible!
On July 28th we visited Sunrise Day Camp of Pearl River and presented them with a $5000.00 check supporting their camp program for children battling pediatric cancers!
July 2015
Sunrise Day Camp is a camp exclusively for children with cancer and their siblings. They bring the day camp experience to children struggling with cancer, who rarely are able to participate in normal summertime experiences, without their parents, because of their specialized medical needs. Sunrise is a day camp which allows the children to continue their medical treatment and enjoy the comfort and safety of their own homes at night. The Camp is staffed with medical professionals who can tend to the children’s special needs giving them the unique opportunity to have fun in a safe environment. Additionally, Sunrise recognizes that cancer affects the entire family with siblings often feeling left out. Siblings are welcome to attend camp giving them the opportunity to connect with the siblings of other sick children and allowing them to escape the constant worry often found in a home with a severely ill child.
During the summer of 2014, Isabella and her older sister Brianna had the opportunity to attend Sunrise. Isabella really enjoyed making new friends and experiencing new things, all while feeling comfortable that everyone at camp was in the same situation as she was. Isabella needed a great deal of assistance, because of the disabilities that were a side effect caused by her cancer. The staff at Sunrise made every accommodation necessary to assist Isabella in getting around, assuring that she could attend comfortably with all of the special assistance she required. Brianna also attended camp. It was a place she looked forward to attending each day, at a time when it was difficult to find happiness amongst the complications of our daily life. She cherishes the experiences, friends and memories she had made. We know personally how special a place Sunrise is and we are delighted that we are able to make this donation in support of this uniquely wonderful place, that brings joy to many families throughout the tri-sate area.
We are grateful to all of our supporters. It's because of your kind support that we are able to make this donation in Isabella's name. Thank you for your continued support, which allows us to make a difference in the lives of children with cancer!
Pictured Left to right: Robin Rosenberg, Sandy Haft, Denise Romano, Brianna Romano, Christopher Romano, and Jeremy Levin
A Special Thank You
To Motion Pictures
Studio Mechanics
Local 52!
In recognition of generous contribution from the
caring members of Motion Pictures Studio Mechanics Local 52!
April 2015
We'd like to extend a special thank you to the Members, Officers, & Executive Board Members of the Motion Picture Studios Mechanics Local 52. Generous donations from organizations helps us make great strides in achieving our mission and goals. We are grateful they have chosen to support our foundation!
Would you like to know more about the meaning behind the foundation logo and who created it?
November 2014
The logo is intended to be a reflection of our mission "Sharing Peace through friendship, Creating Awareness, and Fighting for a Cure" in memory of our Angel. It was created by a friend and graphic designer, William Gramigna, of Press Proof Studio, Inc. in Norwalk, CT. When we approached Bill to create the logo we had asked him to create something that is reflective of our Angel. Our vision was to include her favorite colors pink and purple, a grey ribbon for Brain Cancer awareness, the color gold for Pediatric Cancer awareness, and a rose that is symbolic of both Bella's middle name and the sign of peace, which a rose is commonly known for. We were truely delighted and touched by how well he captured everything we asked for and exceeded our expectations by creating this stunningly beautiful logo for us. Many thanks to Bill and Press Proof Studio, Inc. for sharing his talent and our vision with us.
