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September, It’s not the same to you as it is to me…….. September 18, 2018

Posted by Waking Up With A Broken Heart in Uncategorized.
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We are just over halfway thru September.  For some that means we are closer to Halloween and they need to decide on their costumes. Thanksgiving is coming, that means it’s almost Black Friday, let’s start making a list.  For others, it’s the realization that Christmas is just around the corner, start the planning, gift list, parties, decorations?….. And who shall we invite for Christmas Dinner….

For others, like me, it’s halfway near the end of the month that recognizes and reminds us (like we need reminding)  that Childhood Cancer is REAL, that it is NOT going away, and that it’s the reason my/our heart is eternally broken and bleeding……….

This has been a VERY EPIC year and month so far for the Childhood Cancer World and myself…..

  • After MANY years of advocacy and pleading the STAR Act Unanimously passed the House and the Senate and has been signed into law by the President. This is the bill so many of us have been working to pass for years now, traveling to Washington DC multiple times a year, meeting with our Senators & Congressmen to explain the desperate need for the Most Comprehensive Childhood Cancer bill ever introduced (& signed into law!!!). We are beyond thankful for the unanimous support we received to pass this bill. The STAR Act stands for Survivorship, Treatment, Access, & Research. This legislation authorizes $30 MILLION annually from 2019 to 2023 for desperately needed programs and research related to childhood cancer.
  • ****At our Childhood Cancer Caucus this past Friday, Rep Michael McCaul informed us that the Star Act would be fully funded this coming year.****
  • The Right to Try Act passed and was signed into law giving children with NO options Hope for survival by giving them access to experimental drugs that show promise, but are not yet FDA approved. When there are no more options available for your child and you know that there is even the slightest chance that a drug could help your child, you have no idea how important this is. I know, I have been there……..
  • The RACE for Children Act (The Research to Accelerate Cures and Equity for Children Act) unanimously passed and the President has signed it into law.  The Race for Children Act will bring new drugs to kids with cancer by authorizing the FDA to require that novel drugs developed for adult cancers also be developed for children when the molecular targets of the drugs are relevant to childhood cancers. This is a huge milestone for the Childhood Cancer World.
  • The Creating Hope Act The Creating Hope Act expands the FDA’s priority review voucher (PRV) program, allowing pharmaceutical companies to expedite FDA review of more profitable drugs in return for developing treatments for rare pediatric diseases including Childhood Cancers.
  • Last year the Food and Drug Administration approved the first treatment that genetically alters a patient’s own cells to fight cancer, This treatment is for patients with a type of Acute Lymphoblastic Leukemia (ALL), which is the most common form of Childhood Cancer. Scientists genetically modify a patient’s own immune cells in the lab, then infuse these new cells back into the patient’s body. These modified cells – called CAR T cells or chimeric antigen receptor T cells – then prompt the child’s own immune system to attack and kill the leukemia cells. This is a huge milestone that will transform future treatments for our kids. A treatment that holds great promise for all Childhood Cancers. (Mystic Force Foundation funded $125,000 for research into Cart T Cell for Neuroblastoma (the most common solid tumor in young children) with the Promise and Hope of a future filled with less toxic, more effective treatments for our kids.)
  • Our own Foundation, with the support and generosity of the Dante Law Firm & individuals and companies in our communities and across the country has opened a Childhood Cancer Haven named The Heroes Hangout, the first of its kind in the country. A place where our Heroes can come hang out, play video games, do crafts, ‘shop’ for toys (at no cost!!), and just have fun like all kids should. We will hold special events on the weekends and Holidays.  The Heroes Hangout will not only be for our sweetest children but for the parents as well. To see your child happy, to bring them joy and laughter while they are going through such a traumatic and painful experience is a feeling that is indescribable unless you have lived through it. The financial burden of a parent with a child battling cancer is most often times overwhelming to the point where many lose their jobs, their insurance and many times must file for bankruptcy. Although there is no greater joy to these parents than to see their child with a smile on their face, the simple task of buying a toy is often a luxury that many cannot afford. (My own baby’s bills were close to $5 MILLION!) The Heroes Hangout will help parents in this sense as they will have a place to bring their child that will allow them to enjoy the happiness on their children’s faces in a stress-free environment away from the angst of the hospital and the potentially deadly germs of the outside world, at no cost to them whatsoever. Check out our news story here https://wsvn.com/news/local/heroes-hangout-opens-in-north-miami-beach-as-new-haven-for-children-battling-cancer/
  • We are Thankful for Superintendent Alberto Carvalho for joining us for the Grand Opening and Ribbon cutting ceremony for our Heroes Hangout as well as his continued support of our littlest Heroes through the Miami-Dade County Public Schools.  Students and teachers throughout Miami-Dade County this month will be making cards and posters of support for our Heroes as well as holding toy drives, blanket drives and many other amazing events. We Thank you for the Proclamation to the Mystic Force Foundation as well as all the toys for the Heroes Hangout.
  • We were honored to have our sweet Retinoblastoma Childhood Cancer Warrior ‘JJ’ as our guest DJ at the Heroes Hangout and Police Car Initiative event. Although JJ lost both eyes to this evil disease, his spirit is not shattered and he is the sweetest & happiest child, with a passion for music and a dedication to being the Greatest DJ EVER!!
  • Our Childhood Cancer Police Car Initiative has brought together Police Departments from across Miami-Dade County in a United effort NEVER seen before in support of our littlest Heroes batting this devastating disease.  To see these police cars wrapped and decorated with Gold Ribbons and phrases of support for our Heroes is truly a remarkable and heart warming sight. Appreciation for this can never be put into words. We are truly #TheForceBehindTheCure.
  • Our annual Mayoral Proclamation Initiative is in full force and as every year, we look forward to receiving Childhood cancer Awareness Proclamations from all 34 municipalities in Miami-Dade County.  We are thankful to the cities of North Miami Beach, Aventura, North Bay Village and Surfside which have already recognized this very important month.
  • We have received Governor Rick Scott’s Proclamation proclaiming September as Childhood Cancer Awareness Month in the State of Florida.  We appreciate the Governor’s continued support of our littlest Heroes. The signed Proclamation will be hung in our Heroes Hangout.
  • We will hold GOLD parties this month at our Heroes Hangout, at Nicklaus Children’s Hospital and Joe DiMaggio Children’s Hospital as well. #ChildrenAreMorePreciousThanGold 

A week in our Nation’s Capitol – Our 6th Annual Curefest

  • On September 13th we held our Golden Toast at The Library of Congress, our annual Celebration to Honor and Thank our Congressional Leaders who are the Champions and the voice for our children on Capitol Hill.  We joined together to thank them and to Celebrate our Victories of the past year.
  • September 14th we attended the 9th Annual Congressional Childhood Cancer Summit in our Nation’s Capitol. We heard from Representative Michael McCaul, the Founder and Co-Chairman of the Congressional Childhood Cancer Caucus,  NCI Director Dr. Ned Sharpless spoke about pediatric cancer research, the need for basic science, the Cancer Moonshot, and Big Data.  We also heard from Co-Chair Mike Kelly and our own Gavin Lindberg, who’s son was in treatment with my own baby.
  • At the Childhood Cancer Summit, NCI Director, Ned Sharpless, said that he ‘thinks’ we are past the 4% of NCI funding for Childhood Cancer Research, and that ‘maybe’ we are closer to 7%. I say show me the NUMBERS.  Tell me EXACTLY what the amounts are.  No ‘thinking’, no ‘guessing’, we want TRUE FACTS. Don’t just say what you think we want to hear because we are all pressing you for more.
  • September 15th – The 2018 Curefest Rally to the Capitol was filled with hundreds of us gathering at Freedom Plaza in a meet & greet of Foundations, of supporters and of families and friends battling Childhood Cancer from all over the country, coming together in a unified effort to support and make change for the Childhood Cancer World.We joined together and walked to the Capitol, carrying pictures, banners, signs and chanting our words in support of change. One of the most emotional chants ‘Please don’t look the other way—–you may be walking with us one day’ You never know if it will happen to you or someone close to you.
  • September 15th Candlelight Vigil  Once again we gathered at Freedom Plaza. To see these Heroes on the stage telling their stories, asking for change, thanking everyone for their support and many dancing (many who have lost limbs to this torturous disease) is truly an unforgettable experience. Again, we were honored to have Rep. Michael McCaul by our side and have him receive the ‘Golden Gloves’ Award for being our Champion, his eternal support, his kindness and his dedication to our fight. We walked to the Whitehouse together, united as one, in honor and remembrance of our children.  One by one, on the Whitehouse lawn, we said our Angel child’s name and the thousand friends around us repeated each name, a reminder that they will NEVER be forgotten. The breathtakingly beautiful, yet painful singing of Amazing Grace, while holding our candles up to the darkened sky as if to reach our Angels, is, by far, the most difficult moment for me personally.
  • September 16th Curefest Festival on National Mall – As Sponsors of this incredible event again this year and our 6th year participating, we are reminded of the impact that people can have when they join forces.  Close to 100 Foundations from all over the country brought together in our Nation’s Capitol for the largest display of support and solidarity for our littlest Heroes.  Children battling cancer and their families there as well. Please see our pics on Facebook https://www.facebook.com/BeTheForceBehindTheCure/
  • We are Thankful to our friends Dena Sherwood and Mike Gillette from Arms Wide Open Foundation and Emmy award winning The Truth 365 for their drive, their vision and their unparalleled commitment to the Childhood Cancer World as the founders of Curefest and so much more. To Nancy Goodman from Kids v Cancer for writing these bills and changing the the landscape of Childhood Cancer through her policy writing. To Danielle Leach of St Baldricks Foundation for tirelessly walking the halls of Capitol Hill for change. And to the hundreds of other Foundations and advocates that come together to make change for our kids.  It is only through our #UnitedEfforts and being #OneVoice for our Heroes that change is happening.  I and our entire Mystic Force Foundation team are beyond honored and humbled to be a part of this change and this continued HOPE. 

So yes, September is halfway through, BUT, I am not halfway through my efforts of raising awareness, bringing Hope and fighting for kids like my precious Sal.

I am beyond Thankful for the years of support of my City of North Miami Beach and the North Miami Beach Police Department. The support received by this amazing city is like no other and I look forward to our continued collaboration for children battling cancer in South Florida and through out the world.

My baby died due to the #1 disease killer of children in our country.

Did you know that Childhood Cancer kills more kids per year than more than Asthma, Cystic Fibrosis, Diabetes and Pediatric HIV/AIDS combined.

Did you know that 1 in every 285 children will be diagnosed with cancer before the age of 20? Did you know that 16,000 kids a year are diagnosed with cancer in our country and that over 3,000 children die each year from cancer?     NO, I’m sure you did not know those facts or at least not before we met.  Why would you know? Why would you want to know that? But I/We need you to know. We need you to let others know. It is the ONLY way that we will continue to make change for our children that so desperately need change.  For the ones battling now, in memory of those that this disease tragically took from us and for the ones that will be diagnosed in the future.

Please join me the remainder of this month, and beyond to help make change, to continue our momentum and to remind our Heroes and families that there is HOPE. There is ALWAYS Hope.

 

I will Forever WAKE UP WITH A BROKEN HEART, but I will also FOREVER fight for what my precious baby died from…………

 

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