Team Neev

🌟 Congratulations to Sandeep Kolte! 🌟

We are thrilled to announce that Sandeep Kolte, our esteemed founder and CFO of the Neev Kolte & Brave Ronil Foundation, has been appointed to the new Technology Advisory Team at Cancer Help Desk. This exceptional team, led by Feroz Mohummed from Lenovo and including other industry leaders, is set to revolutionize support for cancer patients and caregivers through innovative technology and patient-centric frameworks.

Sandeep’s dedication and expertise will be invaluable in driving forward the mission to deliver top-notch support, resources, and education for those in need. We are incredibly proud of his accomplishments and look forward to the impactful changes this team will bring.

Join us in celebrating this amazing achievement and wishing Sandeep and the entire advisory team continued success!

Neev's mom, Misha does everything for only one reason - Neev! Proud of her accomplishments!

👏🎗️ 𝗖𝗼𝗻𝗴𝗿𝗮𝘁𝘂𝗹𝗮𝘁𝗶𝗼𝗻𝘀 𝗠𝗶𝘀𝗵𝗮!! 🎗️👏

We are thrilled to announce that Misha Mehta, President & Co-founder of Neev Kolte & Brave Ronil Foundation, a passionate advocate for childhood cancer research and a dedicated member of our community, has been selected as a board member of CAC2 (Coalition Against Childhood Cancer). 🎗️

Misha's commitment and tireless efforts have been instrumental in our mission to support families and advance research for DIPG. We are confident that Misha will bring valuable insights and continue to make a significant impact in her new role.

Please join us in congratulating Misha on this well-deserved recognition! 👏

📢 Join Us on the NKBR Official Page! 🌟

Dear Brave Ronil and Team Neev family,

We are excited to announce the launch of our Neev Kolte & Brave Ronil (NKBR) Foundation official page! 🎉 This page will serve as a central hub for all our updates, events, and important announcements. By following the NKBR page, you’ll stay connected and be the first to know about:

• 🗞️ Exclusive updates and stories
• 📅 Upcoming events and fundraisers
• 🎥 DIPG information series
. Achievements

Your support means the world to us. By following our official page, you’ll help us gain the visibility we need to attract sponsors and secure funding for our crucial initiatives. This increased visibility will enable us to:

• Expand our outreach and impact
• Fund more research and support families affected by DIPG
• Organize larger and more impactful events

Please take a moment to follow our official page by clicking the link below:

👉 https://m.facebook.com/neevronil/

Let’s continue to spread awareness, share our stories, and support each other as one united community. Thank you for being a part of our mission!

With gratitude,
The NKBR Foundation Team

Neev Kolte & Brave Ronil Foundation We support kids with DIPG/DMG pediatric brain cancer. Our mission includes funding research and trials, advocacy, raising awareness, improving access to care, and assisting patients and families in California.

One of the best news in recent times. Thank you for your support!

🌟✨ We are thrilled to announce that the Neev Kolte & Brave Ronil Foundation has awarded $100,000 to Dr. Sabine Mueller and Dr. Sebastian Waszak from the University of California, San Francisco! ✨🌟

This grant, made possible by the generous donations at the BORN Gala 2023, will fund their groundbreaking research on Cell-free DNA Whole Genome Sequencing. This research aims to measure residual disease and antitumor response in DIPG clinical trials. This is critical research as it will enable doctors and families with a new, novel, and noninvasive way to assess treatment response, bringing us one step closer to better treatments and hope for families affected by these devastating diseases.

🙏💖 Thank you to all our donors! Your support is invaluable and makes this crucial work possible. Together, we are fueling hope, advancing research, and moving toward a cure.

Join us in celebrating this incredible milestone and stay tuned for more updates on the remarkable impact your contributions are making! 🌟💪

https://www.neevronil.org/fund-raiser/

🙏 Join Us in Painting Facebook Gold 🎗️ This September for Childhood Cancer Awareness!

I'm excited to share an impactful initiative by the Neev Kolte & Brave Ronil Foundation, a nonprofit that holds a special place in my heart. Founded in tribute to Neev and Ronil, whom we lost to childhood cancer, this foundation is dedicated to providing love, compassion, and unwavering assistance to families facing the challenges of childhood cancer.

🎗️Get Involved!🎗️
We're running a T-shirt fundraiser to raise awareness and funds for critical childhood cancer research. Each purchase helps bring us closer to a brighter future for these brave children.

Let's unite and make a significant difference! The deadline to purchase your T-shirt or sweatshirt is August 15th. Wear it proudly in September to show your support. Your timely action can make a difference.

Visit https://lnkd.in/g4x2M87p to learn more and join this noble cause. Your support means the world to us and the families we help. We can honor Neev and Ronil's legacy by positively impacting our community.

🙏 Every child deserves a fighting chance. Don't wait; order your shirt today and join us in this noble cause!

Misha Mehta Sandeep Kolte Manisha Modi Milan Mehta Chloe J. Chaput Ramji Srinivasan, West, Kim Beauchamp, Elizabeth Motahari Neev Kolte & Brave Ronil Foundation

Education Series: Post #3

Understanding Tests to Diagnose DIPG

If your child has symptoms that suggest a brain tumor, their doctor will need to determine if these symptoms are due to a brain tumor like DIPG or another problem. The diagnostic process includes a thorough history, physical and neurological exam, CT scan, and MRI.

Key Diagnostic Tests and Procedures:

1.⁠ ⁠Magnetic Resonance Imaging (MRI) with or without Gadolinium): Uses a magnet, radio waves, and a computer to create detailed brain images. Gadolinium, a contrast agent, may be injected to make cancer cells appear brighter. This procedure is crucial for visualizing the tumor’s size, location, and extent.

2.⁠ ⁠Neurological Exam: A thorough assessment of symptoms such as facial weakness, difficulty swallowing, and problems with eye movement. Evaluates overall neurological function.

3.⁠ ⁠Biopsy: This procedure removes a tumor tissue sample, usually via stereotactic biopsy, guided by imaging techniques. A pathologist analyzes the tissue to confirm the diagnosis and provide details that guide treatment.

4.⁠ ⁠Immunohistochemistry: A lab test using antibodies to detect specific antigens in a tissue sample. It helps diagnose cancer and differentiate between cancer types.

Additional Information:

1.⁠ ⁠Imaging Techniques: MRI is preferred for its non-invasive nature and detailed imaging capabilities. Gadolinium-enhanced MRI helps visualize the tumor better.

Why It Matters:
Early and accurate diagnosis of DIPG is crucial for several reasons. Understanding the nature and extent of the tumor allows healthcare professionals to develop an effective treatment plan tailored to your child’s specific condition. Accurate diagnosis helps avoid unnecessary treatments and procedures, ensuring your child receives the most appropriate care. It also provides critical information for planning potential participation in clinical trials, which may offer access to new and promising therapies. Moreover, a precise diagnosis can help manage symptoms more effectively, improving your child’s quality of life and providing a more accurate prognosis. Early detection and diagnosis are crucial to navigating the challenges of DIPG and seeking the best possible outcomes.

Call to Action:
Discuss the test results with your child’s doctor to plan the best treatment strategy and explore available support resources like DIPG-ONELINK (https://dipg-onelink.org/). In fact, Misha Mehta, President & Founder of Neev Kolte & Brave Ronil Foundation, is one of the contributors to developing DIPG OneLink.

Consider getting a second opinion to confirm the diagnosis and treatment plan. Share medical test results and reports with the second doctor, who will review the pathology report, slides, and scans. You can get a free-of-cost second opinion from the DIPG DMG National Tumor Board, which is funded by organizations like the Neev Kolte & Brave Ronil Foundation.
Acknowledgment: Information sourced from the National Cancer Institute (NCI).

What's DIPG in simple terms!

Please follow Neev Kolte & Brave Ronil Foundation page...

Understanding DIPG

Diffuse Intrinsic Pontine Glioma (DIPG) is a type of brain tumor that is highly aggressive and difficult to treat. Here’s a breakdown of what DIPG means:

• Diffuse: The term “diffuse” refers to the tumor’s jelly-like nature. Imagine trying to separate sand mixed into jelly; that’s how intertwined the tumor cells are with the brain tissue. This makes the tumor inoperable.

• Intrinsic: The tumor is located deep inside the brain, making it inaccessible for surgery.

• Pontine: It originates in the pons region of the brainstem, which controls many vital functions of the body.

• Glioma: This indicates that the tumor arises from glial cells, which are the supportive cells in the brain.

Why is DIPG Inoperable?
The pons region of the brainstem is a critical area that controls essential bodily functions such as breathing, heart rate, and motor skills. Any attempt to surgically remove the tumor would risk damaging these vital functions.

I miss him! A lot! A whole lot more than I ever thought... I am ok. Just felt like sharing...

Our online auction is extended till Dec 10th, check it out at -

DIPG Childhood Cancer Online Auction from 11/17 to 12/10

Your Chance to Win Big while Doing Good!

The online auction for "Neev Kolte & Brave Ronil Foundation" inaugural annual fundraising BORN gala is live!

Explore fantastic items such as exclusive getaways like a house in Hawaii, wine tasting experiences, paintings by a local bay area artists, and more.

Your bids contribute to support vital childhood brain cancer research and assist patient families.

Auction link: https://lnkd.in/gUwXPxf7

Have you registered for our gala on Dec 3rd yet?

There is still time to donate and register at https://lnkd.in/gFjtYqc8



Manisha Modi Milan Mehta

Happy Thanksgiving!

I would really appreciate it if you can attend our gala this year or donate towards it to support our mission to find a cure so no other family has to have an empty chair at their dinner on Thanksgiving!

To donate or register please visit...
www.neevronil.org

We lost Neev in November 2021 to DIPG, as you can imagine the holiday season is extremely difficult for us to say the least. To learn to live with our grief, the best way is to help others in our shoes. With this thought in mind, we established Neev Kolte & Brave Ronil Foundation, a 501(c)(3) tax exempt non profit organization.

I need your help in our family's mission to find a cure for DIPG so no other child has to suffer like Neev did.

We warmly invite you to our foundation's 1st Annual Fundraising Gala to support the critical pediatric brain tumor research.

Please register for the gala at www.neevronil.org

If you can't attend in person, please consider donating towards the cause as your support is invaluable to this cause.

Again, the website is www.neevronil.org

Please share this post if you can.
Sandeep
---

Check it out when you get a chance

Candid Conversations With Rennu Dhillon - Series 2 - Episode 1 - The Neev Ronil Foundation, DIPG Candid Conversations With Rennu Dhillon is a vlog which addresses various critical topics and situations affecting the community at large. Series 2 - You Cou...

Happy Birthday Buddy! Miss you a lot.

I always saw my Neevy in the parks, on the trails, in the garden picking his tomatoes. Never thought I would see him in a shoe memorial at the CureFest!

Neev's mom - Misha Mehta

Very proud to share this story.

https://pleasantonweekly.com/news/2023/05/31/pleasanton-mom-gives-up-her-career-for-a-life-in-cancer-advocacy

https://www.linkedin.com/posts/misha-mehta-56b7851b_white-house-cancer-moonshot-forum-on-brain-activity-7067487055131389952-GhS4?utm_source=share&utm_medium=member_android

Meet Neev, a DIPG hero.

When Neev had redness in his eyes and became wobbly, his parents took notice. “We had to take him to urgent care for a viral eye infection. The doctor rushed us to the emergency room and upon arrival, they took us in for a CT scan and confirmed a mass on his brain stem” remembers his mother, Misha. In August of 2020, Neev was diagnosed with Diffuse Intrinsic Pontine Glioma.

Neev underwent two rounds of radiation, three chemotherapy agents and a brain biopsy. He endured abdominal surgery to place and remove a pump. After losing all bodily functions, he started intense rehabilitation and regained a few functions back. At that point, he went through experimental chemotherapy and lost all functions he had regained. Through it all, Neev and his family remained optimistic and determined.

On November 30, 2021, Neev passed away surrounded by family. His family started a Go Fund Me page shortly after he was diagnosed to help with the medical expenses and with the money that wasn’t used, the family donated it to fund DIPG research.

In December 2022, Neev’s brother, Rayann held a toy drive and donated the toys to kids undergoing treatment at UCSF Benihoff Children’s Hospital.

Together, we can make a difference. Donate today, because kids can’t fight cancer alone!®

Learn more about DIPG here: https://www.acco.org/dipg/

Neev!

https://www.pleasantonweekly.com/news/2023/01/13/a-toy-drive-for-neev

URGENT - HELP TODAY!!
No $$ REQUIRED!! 💥💥7 Hours ONLY: 💥💥. Down to the Wire to pass two bills for Kids Cancer!!

1. CALL Senator Murray 202-224-2621 AND also
CALL Sen Schumer (202) 224-6542 and leave this message: “please put ‘Give Kids a Chance’ into the Omnibus today. We need these combination studies of NEW drugs to fight kids cancer. Thank you for putting Gabriella Miller Kids First in the Omnibus recommendations. We need these research dollars AND combination trials to fight kids cancer.”

NOTE: Senator Murray did not add both because she thought "there wasn't enough energy around Give Kids A Chance.” BRING The ENERGY today Folks!! If you are in Washington State tell her. She’s your Senator. If you can’t get through right away please call back, we have taken down the phone lines once today, but need continued support.

(For more info)
www.givekidsachanceact.org

We need minimum 200 calls please ask your friends to make these two calls too.

2. On Twitter, Insta and FaceBook:

Facebook post THE ABOVE message and

On Twitter: please THE ABOVE post and DM her as well.

On Insta: please DM her.

Thank you.
If you’d like - leave a ✅ in comments when you complete any step. Please share!

It's Neev's birthday today, October 21st. He would have been 7 today. This picture is from his last birthday.

There hasn't been a moment when I have not thought of him since he has been gone.

Neev passed away just one month after his 6 th birthday. Neev was our pride and joy, a funny life loving toddler and the best younger brother.

DIPG took him away. We decided to continue the fight. You probably are aware of how devastating this disease is as you all have followed Neev's journey. Support from our families, friends and people that don't know us made sure we were covered in prayers, blessing as well as financial help. Now we are doing our part to give back.

To help push research forward, we started a non profit to honor Neev and dedicate our life to help push the needle forward so as no other family has to hear "go home and make memories."

As part of our organization, Neev Kolte Foundation, we are now a part of a 60+ family alliance called DDRFA.

We are working with the White House Cancer Moonshot Initiative started by President Biden, in conjunction with AWS and CBTN and NCCI to analyze sequencing, imaging and biomarkers in real time.

To develop biomarkers for early detection of brain tumors, with the focus on DIPG. We are using our experience and Misha's research training as a scientist to identify some gaps where we can seek industry partners to rapidly change the DIPG landscape.

THE SPECIFICS:
As part of DDRFA (https://ddrfa.org/), we have funded the first national tumor board to help children like Neev to seek experts from DIPG centers of excellence. This will also be the first year that we as part of DDRFA have already help fund Dr. Gibson (https://profiles.stanford.edu/erin-valdez) from Stanford University for "Targeting circadian regulation of epithelial-mesenchymal transition and tumor invasiveness in pediatric gliomas".

This is the very first study that is going to look at the cell cycle stages of DIPG cell in context of the environment to answer questions, like when are the cells most active, that will help doctors decide best time to treatment.

Simply speaking, when your doctor tells you to take your medicine at a specific time of the day, the reason is that they know that's when that medicine will benefit you the most.

We want the doctors to find out the cell cycle for DIPG so they know the optimal time to administer treatments to these kids with DIPG.

Helping the researchers come up with treatments to cure this dreadful disease is our life mission now. 70 years ago Neil Armstrong's daughter died with this same cancer and unfortunately the treatment still remains the same, radiation!! It still is one of the few cancers which is terminal on diagnosis. The child is cognitively aware till the very end, while stripping off all the bodily functions one at a time.

If you would like to help please consider donating to this project please use the following link:
https://dragonmaster.org/how-to-help/neev-kolte.html

Dear Friends and Family, we have started a not-for-profit DIPG foundation in honor of our sweet Neev- Neev Kolte Foundation.

Through our foundation we are excited to be part of an alliance like DDRFA. We are proud to be a part of 50 plus other organizations that fund research which is the only thing that will help move us closer to finding a cure.

‘Powered by families, because lives depend on it’, is more than a tagline to the fifty plus foundations and family funds that make up the new DIPG DMG Research Funding Alliance. These members know well that DIPG Won’t Wait to claim the walk, talk, swallow, sight, hearing and last breath in the deadliest childhood illness. For that reason, these members come together to urgently fund basic and translational research, access to clinical trials and the integration and utilization of patient data. Through grants of $25,000 to $250,000 funded by DDRFA members, this funding alliance plans to help further the road to a cure. DDRFA focuses its funding on this brainstem glioma most commonly attacking children ages 4 to 12. If you would like to help, please contact us to become a DDRFA member or to donate as you are able.

It has been a while since I posted on this page. I will write a separate one for giving you an update on how we are doing.. Right now, there's something more pressing.

DJ .... One of my best friends, my brother! DJ fought a tough battle with cancer. He passed away yesterday, Feb 06, 2022.

As if I did not have enough pain already, DJ went too soon! Within 4 months of his diagnosis.

Here's a GoFundMe we created for his family.

I am obviously going to be there for his family till I am alive... If there's anything you can do to help, donate or share in your social circle - (FB, Insta, WhatsApp, LinkedIn), I would really appreciate it.

https://gofund.me/fbe876ec

Sandeep

Dhananjay Mangalekar (DJ) Memorial Education Fund, organized by Sandeep Kolte Goal To raise funds for Aaryan (14) and Ishaan (8) after the untimel… Sandeep Kolte needs your support for Dhananjay Mangalekar (DJ) Memorial Education Fund

Here is a game someone created for Neev. They used his voice in the game, so please keep your speakers on. When Neev saw it and played it the first time, he really loved it.

Do you want to try and beat the highest score which is 6k as of now? Please feel free to put a comment here with your score if you play.

https://www.instagram.com/ar/264964975505991

Neev's Rock & Roll by ladinabattle https://instagram.com

Thank you all for your messages, thoughts, prayers for Neev and our family. The outpouring of love for Neev is truly humbling.

A lot of people are concerned about us and want to know how we are doing.

We have been getting a lot of calls, messages and wishes to meet in person, or provide something to make our life comfortable. There's really nothing on that front that one can do for us... Let me just say we will never be the same but yes, there's one thing we would like to request you to consider.

We want to channel our grief to fund research that will help doctors and scientists understand DIPG better so it can help find a cure in real time. All funds will be used to study a pilot advanced FET PET imaging research project currently at CHOP - Children's Hospital of Philadelphia.

This project is proposed by Dragon Master Foundation. This foundation, and especially the founder, Ms. Amanda Haddock, has been a great support in our journey as Neev fought with this disease.

In liu of flowers or cards, our family would really appreciate it if you consider making a sizable donation to this cause. The hope is that the learnings from this study will ultimately translate in helping families save their kid's life.

Kolte family will match every dollar that comes in for this cause.

Thank you.
Misha and Sandeep

PS. Please feel free to leave a comment or share it on your wall or groups for better visibility.

https://dragonmaster.org/how-to-help/neev-kolte-2021.html

Neev Kolte Neev Kolte

We regret to inform you that Neev passed away yesterday (Nov 30) around 6pm, surrounded by his family. We thank you for supporting Neev throughout his battle. The family requests that we be allowed to mourn in isolation. Please don't send any flowers home.