November 2019 Newletter

Happy Fall From C.U.R.E.

Thank you for subscribing to our newsletter. We hope you can attend a program or event or support C.U.R.E. this month. Please share our newsletter on your social media profile to spread the word about C.U.R.E.

C.U.R.E. Spotlight

Applying for Social Security Disability Benefits with Childhood Cancer

The Social Security Administration (SSA) offers financial assistance in the form of Social Security disability benefits to help people with disabilities and medical conditions cover the costs of their everyday living expenses. If your child has been diagnosed with cancer, disability benefits may be available to help your family’s financial situation.

There are two types of disability benefits that are available through the SSA: Social Security Disability Insurance (SSDI) and Supplementary Security Income (SSI). SSDI benefits are based on a person’s employment history and how much they pay into their employment taxes. This type of benefits is not applicable for children.

SSI benefits are based on a family’s financial need. To qualify for SSI benefits, the child must not have a high source of household income. The SSA will not count all income parents earn against the child when determining if he or she qualifies for benefits. You can learn more on income limits for childhood SSI benefits on the SSA’s website.

Medically, your child must also be expected to be ill from cancer and unable to go to school or partake in childhood activities for at least 12 months.

Through a program called “Compassionate Allowances”, children with specific types of serious cancers are eligible for a quick approval process through the SSA. These types of cancers include, but are not limited to:

· Child neuroblastoma

· Child non-Hodgkin lymphoma

· Osteoscarcoma

· Kidney cancer

Your child will also qualify for a Compassionate Allowance if one of the following conditions is met:

· The cancer is inoperable

· The cancer has spread to distant regions of your child’s body

· The cancer has returned despite initial treatment

If your child does not have a cancer that qualifies as a Compassionate Allowance, he or she can still be approved for disability benefits by medically meeting a childhood cancer listing in the SSA’s Blue Book. The Blue Book is a list of conditions that make a person eligible for disability benefits.

For childhood cancer, being eligible for benefits depends on the progression or stage the cancer, how long your child has had cancer, and how well your child responded to therapy. Eligible conditions include:

· Malignant solid tumors

· Lymphoma

· Thyroid gland cancer

· Retinoblastoma

· Malignant melanoma

· Leukemia

· And many more

Your child’s application for disability benefits will need to include all available medical evidence, such as treatment history for drugs and dosages, as well as records of surgeries and radiation therapies.

Finally, if your child can’t meet a regular Blue Book cancer listing, the symptoms of your child’s cancer treatment could qualify for disability benefits. Eligible side effects such as stomach problems, nausea, ongoing weakness, and brain and heart complications can qualify your child for disability benefits.

If your child’s condition does not match another listing in the Blue Book, they may still qualify for benefits by “functionally equaling” the listings. This means that you must demonstrate to the SSA that your child has limitations in at least two of six areas of function. The six areas of function are:

· Acquiring/Using information

· Attending to/Completing tasks

· Interacting with/Relating to others

· Moving around and using objects

· Caring for his or her own physical needs

· Health/physical wellbeing in general

Being as detailed as possible in your child’s disability benefits application will help demonstrate your child’s, as well as your family’s need for financial assistance during this difficult time.

You can apply for childhood cancer disability benefits in person at your local SSA office. To schedule an appointment, you can call the SSA toll-free at 1-800-772-1213.

This article was provided by Mark Steele of Disability Benefits Center, an organization dedicated to providing the public with information on the disability benefits process. Check out www.disabilitybenefitscenter.org, or email Mark directly (mts@ssd-help.org).

C.U.R.E. Spotlight
Meet Abby

My name is Abby and I am 11 years old. I am a 6th grader at Johanna Perrin Middle School in Fairport. I have two older brothers, Billy who is 16 and Ben who is 14. I enjoy playing soccer and spending time with family and friends. In December 2018, I was diagnosed with a brain tumor called Pilocytic Astrocytoma. I had surgery to place a shunt in my brain to drain the fluid built up by the tumor. I am currently undergoing chemotherapy to help shrink the tumor. When I am not having treatments, I like to travel with my family. My favorite places to go are Disney, Daytona Beach and on cruises.

Handprint Part
y

After our C.U.R.E. kids finish treatment, we offer to have them come to our office for a Handprint Party. We have their favorite snacks and have them do a handprint for our gallery and some to take home.
Our friend, Allivea, got to celebrate at our office with Cheez-its and Popcorn!

We would love to hear from YOU!!

Please take a moment to fill out this quick survey so that we can better assist our volunteers!

https://www.surveymonkey.com/r/PXS2VL9

Thank you!

Upcoming C.U.R.E. Programming and Events (ADD EVENTS TO CALENDAR)

Thank You For Your Support

Dawgs check.jpg — C.U.R.E. Fundraiser with the Dawgs

A “Rocking” time was had on October 11th, as the Dawgs partnered with Buntsy’s Neighborhood Bar for a fundraising performance to benefit C.U.R.E. Childhood Cancer Association.

Ashley and Carter Helmicki.jpg — Thank You to Usborne Books & More

Thank you to Usborne Books & More for the your generous donation! These Cuddle Bear books and plushes are going to brighten many faces!

Thank you to Verhulst Haunted Hayride for the great time on October 18th. Everyone enjoyed the SPOOKY time! — Thank you to **Verhulst Haunted Hayrid**e for the great time on October 18th. Everyone enjoyed the **SPOOKY** time!

Upcoming Fundraisers

mermaid headbands.jpg — Mermaid Tail Headband

Who doesn’t want to be a mermaid?
By purchasing your C.U.R.E. Mermaid Headband, you will provide one for a child going through cancer treatment and you get to keep one for yourself!
Check it out at: https://curecca.ejoinme.org/headbands
Headbands can be mailed to the purchaser!

Back by popular demand! (1).jpg — Peachskin Sheets Fundraiser

Mark your calendars! Our Peachskin Sheets Fundraiser is scheduled for November 3rd thru November 24th. These sheets are amazing! They are incredibly soft, and wrinkle free, making them the perfect holiday gift. And as a bonus, $20 from every sheet set sold is donated back to C.U.R.E. That means for every sheet set you purchase, you are really giving two gifts!!

KidCents Rite Aid Round Up Program

By rounding up, you are helping us to reach our goals by simply shopping at Rite Aid. Feel free to invite your friends and family to participate in the program. Imagine the change that your change can make!
See the steps to enroll here!Information on Fundraiser

Boby Boomer Baseball

**Our friend, author Robert Kravetz, will be donating $10 for every book purchased to C.U.R.E.!**
**Want to check out this wonderful book full of stories and stats? Contact him today:** rkravetz@brightonsecurities.com or sfasciano@brightonsecurities.com

awareness coffee.jpg — Awareness Coffee Co.

Our friends at Awareness Coffee are helping to spread awareness about Pediatric Cancer with their coffee made from a specialty bean out of Peru, and roasted to perfection with subtle floral and chocolate notes.
A portion of proceeds will be donated to C.U.R.E., Golisano Children’s Hospital and Camp Good Days – your choice at checkout!
Buy the coffee here!

We Want to Hear From You!

volunteers needed.jpg — Volunteers needed!

We are looking for volunteers for upcoming events in 2020!
If you are interested, please contact Adella at Adella.ivison@curekidscancer.com

Food bags available for cure families!.jpg — **Food Bags for C.U.R.E. Families:**
We know it can hard to make ends meet with the holidays approaching. We at C.U.R.E. want to help! Please contact the office if you would like to stop by and pick up a food bag. We have staples like peanut butter and jelly and mac and cheese that we hope you’ll find helpful!

Please call the office (585-473-0180) or e-mail staff@curekidscancer.com to set up a pick up time!

interns wanted.jpg — Join Our Team

We are currently looking for interns for Summer 2020!!
If you are interested, please email staff@curekidscancer.com

Tell Us Your Story

Has C.U.R.E. helped you? We would love to hear stories about how C.U.R.E. has helped you and your family. These stories will be shared with grantors, donors, on our website and social media. We want the community to know their contributions are making a difference! Submissions can be sent to staff@curekidscancer.com.

New Programs?

What programming would you like to see at C.U.R.E.? We are working on developing more Parents’ Night Out events (where would you like us to set one up??) as well as joint programming with other local organizations. What would you like to see us work on? Please send suggestions to staff@curekidscancer.com

New Young Professionals Group

Email Brittany Charles Gold in you are interested in learning more about C.U.R.E.’s new Young Professional Group!
charlebc11@gmail.com

Bereavement Corner

DEATH IS NOTHING AT ALL

I have only slipped away into the next room
I am I and you are you
Whatever we were to each other
That we are still
Call me by my old familiar name
Speak to me in the easy way you always used
Put no difference into your tone
Wear no forced air of solemnity or sorrow
Laugh as we always laughed
At the little jokes we always enjoyed together
Play, smile, think of me, pray for me
Let my name be ever the household word that it always was
Let it be spoken without effort
Without the ghost of a shadow in it
Life means all that it ever meant
It is the same as it ever was
There is absolute unbroken continuity
What is death but a negligible accident?
Why should I be out of mind
Because I am out of sight?
I am waiting for you for an interval
Somewhere very near
Just around the corner
All is well.
Nothing is past; nothing is lost
One brief moment and all will be as it was before
How we shall laugh at the trouble of parting when we meet again!

~ Canon Henry Scott-Holland, 1847-1918,
Canon of St Paul's Cathedral