The Kelly Family

The Kelly FamilyFor the Kelly family, Chiari and syringomyelia are a family affair. It took 20 years for mom, Jennifer, to finally receive a diagnosis of Chiari after years of being dismissed by various physicians. She lives in New York with her husband, Tom, and children: Michael, Katie, and Gracie.

Although she was told it was very unlikely her children could be affected, Jennifer had a nagging suspicion they were. She had to fight to get MRI’s for her children, and it was then that her worst fears were confirmed. All three had the condition. Gracie, the youngest, was the most seriously affected. She had a dangerously large syrinx and needed immediate surgery. Today, mom and two of her children have undergone surgery for the condition. Jennifer and her family continue to advocate for greater awareness and research. Watch the video below and hear Jennifer share the struggles she has faced.

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Volunteers needed to help with events, collect auction items, conference, and special projects. By sharing your talents with ASAP, you can help make life better for all those affected by Chiari and/or syringomyelia.

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Attention ASAP Facebook Members!

In order to keep our online community better updated and informed we have created a new and improved Facebook Fanpage!  Designed with you in mind, we have made it easier than ever to connect with fellow ASAP members and stay updated and informed about what’s new with the organization.

This is the place on Facebook to share your thoughts, pictures, comments, videos, inspiration and support with one another. The more connected we are, the more powerful our community is!

Please click the following link and become a fan of the new ASAP Facebook page today:

ASAP’s Facebook

Mason’s Mission

Congratulations to the Gaffney’s for organizing a successful fundraiser! The Gaffney’s decided to start fundraising after their son Mason was diagnosed with Chiari at six months of age. They created their own web site and this past September hosted the First Annual Family Fun Day. With over 100 people in attendance, the event was a big hit and featured an indoor play center, a DJ, chair massages, art and music classes for the kids. There was plenty of great auction items and altogether the event raised over $6000.

If you would like information on how to organize a fundraiser in your hometown, contact Patrice Schaublin at

Walking for Research Dollars

Jaxon EilersJaxon Eilers may someday be a doctor but today he just wants to be like his friends.Jaxon's Walk

As 7-year-old Jaxon watched neighborhood kids going door-to-door selling magazines and delivering Cub Scout popcorn, he wanted to do a fundraiser, too.

His parents helped turn is dream into reality. Jaxon’s Quest for a Cure, an awareness walk for Chiari malformation, was held October 10 at Noelridge Park in Cedar Rapids, Iowa.

Besides raising awareness, the event generated $3,975 for research.

For details on how to organize your own walk, contact

Cruisin’ For Chiari

Cruisin For ChiariIt was nothing but smooth sailing for the First Annual Cruisin’ for Chiari, held on August 30th in Brielle NJ.
Over 75 guests boarded the River Queen, a traditional paddle boat that sails the Manasquan River, Point Pleasant Canal, Barnegat Bay and Metedeconk River. Guests enjoyed a 3 hour cruise that included a buffet lunch, silent auction, music and raffle.

Joining us for the event were ASAP members traveling from 5 different states, CEO Mike Scarpone, Board member Patrice Schaublin, the Livingston family, their friends, family and the guest of honor, 3 yr old Gabriel Livingston.

Cruisin For Chiari CakeThe event was a tremendous success and we were able to raise over $10,000 to be donated to ASAP’s research fund.

We thank all that attended and supported the event, as well as JR Warnet of Nevermore Photography, DJ Johnny’s Magic Moments, Payton Livingston and the many businesses that made generous donations.

Planning for the Second Annual Cruisin’ for Chiari has already begun, so we hope to see more of you out there next year!

National Coins for The Cure Day

Volunteers from across the nation came together to spread awareness and raise funds for Chiari and syringomyelia on October 10, 2009 for ASAP’s Annual Coins for the Cure Day. Weather ranged from bright and sunny, to cold, rainy and even snowy, but volunteers didn’t let that get in the way of their goal making CM and SM a household name.

Participants came up with lots of creative ideas to get the word out. Locations varied from festivals, malls, schools, grocery and shopping stores even a plane—yes, that’s right, a plane flight from Raleigh to Philadelphia served as a Coins for The Cure site!

The event was so popular, we’ve decided to add a spring date. Stay tuned for more details on how you can participate.

Weekend Camp for Kids Won’t Be Forgotten

ASAP and Miracle Wish for Chiari joined together to send children with Chiari malformation and syringomyelia along with their families to Victory Junction Camp in North Carolina this past November.

Complete with riding stables, a 4-lane bowling alley, water park, auditorium, indoor kickball and wiffle ball park (including night lights and score board),  Victory Junction is not just a camp, but an opportunity  for children and families  to escape the day to day struggle of health challenges. 

But just in case health problems creep up, no fear. The medical facility (called the Body Shop) is a miniature hospital.  They have all the necessary equipment, including a full pharmacy, to ensure every child’s needs are met. A total feeling of safety and security prevails throughout Victory Junction. 

Twenty three families attended the weekend. Some highlights included: a three-hour sit-down session with geneticist Dr. Allison Ashley-Koch as well as pediatric neurosurgeon, Dr. Fuchs; communal dances after every meal; a skit featuring all 23 families; and a full video crew was on hand to film the entire weekend and provide each family with their own DVD.

It was a weekend that laid the foundations for lifelong friendship and priceless memories. One child said it best, “I don’t want to go home.”

Special thanks to Victory Junction, Miracle Wish for Chiari and ASAP for making it happen.

Questions about Social Security Determination

2009 Conference Presetation provided by: Connie Valt and Bob Hunt

Social Security Administration

Connie DaValt

WI Disability Determination Bureau

Bob Hunt

SSDI & SSI Disability Overview

Both programs make payments to people with disabilities.

Social Security Disability Insurance (SSDI)

Provides benefits to disabled or blind people who are “insured” by workers’ contributions to the SSA trust fund.

Supplemental Security Income

Makes cash assistance payments to the aged, blind and disabled who have limited income and assets.

Who Can Get Social Security Disability Benefits?

Young Family


Must have paid into Social Security five out of last 10 years.


At age 62
At any age if caring for child under 16 or disabled
Divorced spouses may qualify


Not married under 18 (under 19 if still in high school)
Not married and disabled
before age 22


When do benefits begin?

  • The disability board determines a date of onset that the condition begins.
  • SSDI can be paid retroactively up to 12 months prior to the date the claim was taken
  • 5 month waiting period when no benefits are payable
  • Checks are paid the month after they are due (Feb check paid in March)

Who Can Get SSI?

  • Age 65 or older
  • Blind – any age
  • Disabled – any age
  • Limited income
  • Limited resources

Eligibility can begin the month after Social Security is contacted (but we still need to wait for a medical decision). Checks come on the 1st of the month for that month.

SSI Financial Eligibility
2009 Rates

Have low income and savings

  • “Countable” income:
    • Less than $674.00 per month (individual)
    • Less than $1011.00 per month (couple)
  • “Countable” assets:
    • $2,000.00 for single person
    • $3,000.00 for couple

Health Insurence


Medicare coverage – after 24 months of benefits


Medical Assistance coverage – in Wisconsin, comes automatically with SSI federal benefits

Method of Application

  • Online at
  • telephone appointment (1-800-772-1213)

Application Process

  • Paperless, no claims signature
  • Signature needed on medical release
  • Prepare for claim
  • Complete pre-interview guide – worksheet
  • Enter disability info on internet

Disability Determination Services

Each State has its own DDS – a state agency that contracts with SSA to make disability determinations for SSDI and SSI.

Each DDS applies the same rules for disability determination, based on SSA laws and regulations.

Individual determinations are team decisions made by a disability examiner and one or more medical consultants (MDs and PhD Psychologists)

The Disability Determination

Sequential Evaluation steps:

  1. Are you performing substantial gainful activity (earning at least $980/month)?
  2. Is your condition “severe”?
  3. Does your condition meet a Listing?
  4. Can you still perform past relevant work?
  5. Can you perform other less strenuous or less stressful work?

SSA’s Listing of Impairments

Find them at: If a Listing is met (or equaled), and the applicant is not performing Substantial Gainful Activity, the finding will be “disabled” based on medical considerations alone.
If no Listing is met/equaled, evaluation moves on to the past/other work steps.

Listing 11.19 Syringomyelia

Syringomyelia with:

A. Significant bulbar signs;
B. Disorganization of motor function (i.e., significant and persistent disorganization of motor function in two extremities, resulting in sustained disturbance of gross and dexterous movements or sustained disturbance of gait and station).

When a Listing Isn’t Met/Equaled

The disability examiner determines the applicant’s “residual functional capacity” (RFC), considering:

  • the medical findings
  • details about daily activities
  • effects of pain and other symptoms
  • the opinions of treating and examining doctors
  • any other relevant information

RFC is then used at the past/other work steps

Capacity for Physical Work

  • Exertional capacity – sedentary, light, medium, heavy
  • Ability to stand, walk, sit, lift, carry, handle, reach, crawl, see, hear, communicate
  • Endurance for a 40 hour work week
  • Ability to perform work functions without frequent rest break

Capacity for Mental Work

  • Ability to understand, remember, and follow directions independently
  • Ability to respond appropriately to supervisor, co-workers, and usual work situations
  • Ability to cope with routine changes or stresses in the work setting
  • Ability to concentrate and complete tasks in a timely manner

Information the Applicant can Provide

  • When and where treatment has been provided (at least during the past year)
  • Details about how the condition affects daily activities (in SSA’s Function Report)
  • Details about the impact of pain and other symptoms
  • If possible, a letter from a treating doctor – listing specific limitations and the supporting medical findings

Consultative Examinations

  • If insufficient information is available from treating sources, a CE may be scheduled.
  • If so, attendance is very important. Failure to attend will likely result in a denial of the claim for insufficient evidence.
  • If unable to attend, contact the disability examiner right away so that other arrangements can be made.

For More Information

Visit Social Security’s website at:
While there, locate the nearest SSA office by clicking on the “Find a Social Security Office” link, then enter your ZIP code. Call Social Security’s toll free number: 1-800-772-1213