CSF unite@night Mesa Walk: 10-1

Register here: http://unitenight.kintera.org/mesa

unite@night is a collection of one-mile, casual evening walks around the country that bring together people who are living with the devastating effects of Chiari malformation, syringomyelia, EDS, and related disorders.
unite@night will support CSF Chapters to provide education and increase awareness while funding advocacy work and research projects that can potentially find answers to help those who are fighting these disorders.

Walk Chair:

Alicia Aguirre
(480) 689-3554

The Chiari & Syringomyelia Foundation (csfinfo.org) hosts an annual awareness and fundraising Event each year to benefit the education of patients and the medical community. The Organization is also involved in joint research projects with other organizations to help find a cure for Chiari, syringomyelia, EDS and any related disorder as currently there are treatments but no CURE. These conditions are considered rare and affect all ages, from very young infants to older adults, often with symptoms that are debilitating.

        Walk with us to raise AWARENESS and FUNDING to help FIND A CURE!!

If you wish to donate @ the Walk in Mesa, Park rules state,”No funds be exchanged on Park Grounds”! You must register to donate before the Walk on Saturday, 10-1 @ http://unitenight.kintera.org/mesa  

facebook page https://www.facebook.com/events/166258230452587/

You can still register to participate in the Walk @ Red Mountain Park, Falcon Ramada, beginning 6:00 pm but you cannot donate!


Chiari, syringomyelia, EDS or a related disorder can make a person feel powerless. But what if you– just YOU– could be the one thing that makes their lives better? YOU can be the hope for a better future!

unite@night is a collection of one-mile, casual evening walks around the country that bring together people who are living with the devastating effects of Chiari malformation, syringomyelia, EDS and related disorders.

Bring your own awareness colors or join us in going black & gold to represent all patients who struggle with disorders like Chiari, syringomyelia, EDS and others. You only need to walk as far and raise as much as you can. Every step, roll or crawl is a move in the right direction towards relief from pain for so many.

We hope that with help from walkers like you we will raise $1 million this year for educational, advocacy, awareness and research programs!

Here are some of the amazing projects that walkers like you have already helped support:

Consider Chiari. Even though over one million families in the US are affected by these disorders, many medical professionals either have never heard of them, or aren’t exactly sure how to treat their patients most effectively. Your unite@night support has helped educate hundreds of professionals. In the first half of 2016, alone, your support will help to educate over 200 medical professionals!

Educational Lecture Series. Support for unite@night helps local CSF Chapters host educational lectures for patients, families and the general public, too! These lectures help people learn more about these conditions, what they can expect after diagnosis or treatment, and how to cope. The lectures are always filmed and made available online so people who live in one city have access to the same information as someone who lives in another. Even more importantly, they help Chiari, syringomyelia, EDS and related disorder patients and families meet in person to talk and offer support.

International Patient Database. Research is absolutely critical to helping doctors prepare better treatments for patients. Your donations to unite@night are helping providing the seed money for a huge international patient database that will help determine the best treatments for patients not just with Chiari, syringomyelia, and EDS, but also who suffer from related disorders like dysautonomia, psuedotumor and more.

Advocacy & unite@thehill. Donations to unite@night help sponsor CSF’s annual walk to Capitol Hill, where patients and families are able to bring their personal voice to Congress and the policy makers who have the power to influence their access and quality of care.


Register at the facebook address- https://www.facebook.com/events/16625823045287/


unite@night Walk Event Information:            

Register at the facebook address OR at http://unitenight.kintera.org/mesa


Saturday 6:00 pm  check-in  Walk-7:30 pm

Walk distance, 1 mi. Wear your own colors!




Posted in 2016, CSF unite@night Walk, Events, Related Disorders | Leave a comment

Fall Support Group Meeting, 10-8-16!

St. Joseph’s Hospital and Medical Center, 350 W. Thomas Rd. Phoenix

11:00 am to 1:30 pm- speaker will begin @ 11:15!cci_000059Join us for our Fall Meeting, in the Mercy Conference Room, across from Starbucks (look for the signs) and hear our featured speaker, Martin Faridian, Pharm.D. He is a graduate of the U of A College of Pharmacy, and is currently serving his residency in a unique partnership between Frys’ Food and Drug and Midwestern University, located in Glendale.

The pharmacist, Martin Faridian, has shown a lot of interest in learning about our Support Group and is aware of our neurological conditions which may cause us to need different types of medications. He’ll present a Power Point presentation, with handouts, and will begin speaking @ 11:15 am. Please be prompt.
You may bring a guest and parking is still available @ the 3rd or 6th Ave. Parking Garages at a reduced daily rate. If you are able to attend please designate so on the invite so we can plan on the seating arrangement.

Posted in 2016, Educational and informative news, Meetings | Leave a comment

CCWAA AZ 16 is big success!!





Conquer Chiari Walk AZ 2016 preliminary totals:

We had 461 attend the walk yesterday…hopefully everyone remembered to sign in🙂. So far, Phoenix has raised $15,201.91 for the 2016 Conquer Chiari Walk! Thank you!!! If you weren’t able to attend the walk, or you would still like to make a donation, you can donate online, just select a walker to sponsor, or select sponsor all walkers! https://www.conquerchiari.org/ccwaa16/ccwaa_donate.asp
2016 – Conquer Chiari Walk Across America 2016 – Conquer Chiari Walk Across America CONQUERCHIARI.ORG



Thank you, Beth Wells and Hilarie O’Dell for all the hard work and long hours to make our Arizona Conquer Chiari Walk Across America, 2016, one of the best! You and your team of volunteers, are the BEST! 



Posted in 2016, Conquer Chiari Walk, Events | Leave a comment

Conquer Chiari Walk: this Saturday!!

Tomorrow is the big day!!
Thank you AZ…our site just hit 10k raised!!!

Pre-Registration is closed, but you can still donate online!

14291891_1259934144039766_5840210190495195176_nOnline registration closed last night with 374 pre-registered.

Thank you!! AZ Rocks!


You can register at the walk!

You can still make donations online or sponsor a walker! Please remember, you must raise/donate at least $25 to receive a walk shirt (if you didn’t select a shirt size by the deadline, there will be shirts avail on a first come basis).
To make a donation or sponsor a walker, visithttps://www.conquerchiari.org/ccwaa16/ccwaa_donate.asp



Join us as we walk together on  Saturday, 9-17 to Conquer Chiari! You can still register the day of the Walk and donate to this very worthy cause that has NO CURE! Only treatments, which are sometimes very unsatisfactory! Find out more about Chiari, syringomyelia, tethered cord, scoliosis and other related disorders such as Intercranial High Pressure (IH) that causes debilitating headaches!

Here is our Phoenix, area flyer for information.


SEE YOU at the Walk! Come Early, beat the Heat, sign up OR sign in IF you have pre- registered! 


Posted in 2016, Conquer Chiari Walk, Events, Uncategorized | Leave a comment

Allysa Seely, Local Athlete @ Rio Paralympics, in Paratriathlete Events!


Sport: Paratriatholon14202778_739779066164567_785260226469096887_n

Career Highlights
2015 Paratriathlon World Champion

Allysa enjoys hiking, competing in triatholons and playing with her dogs. She volunteers at a children’s hospice center and works to teach others with disabilities that they are still capable of everything they want in life.

Facebook: Allysa Seely
Twitter: @Allysa_Seely
Instagram: @TRIAllysa

Allysa’s Blog is http://www.allysaseely.com/category/uncategorized/


To see Allysa’s full Paralympics athlete profile, click here.
Allysa is known for her competitiveness, determination and breaking barriers mindset. In 2015, she became the paratriathlete world champion, now she will be heading to Rio for the 2016 Paralympics to try to further her success.


In 2010, Allysa was diagnosed with 3 rare conditions; Chiari II malformation, basilar invagination and Ehlers-Danlos syndrome.
Chiari II malformation means part of her cerebellum and brain stem is located below the foramen magnum. In other words, part of her brain is in her upper spinal canal.
Basilar invagination is an in-folding of the base of the skull that occurs when the top of the C2 vertebra migrates upward. It can cause narrowing of the foramen magnum (the opening in the skull where the spinal cord passes through to the brain). It also may press on the lower brainstem.
Ehlers-Danlos syndrome is a group of inherited disorders that mostly affect the skin, joints, and blood vessels.
Allyssa eventually had to have her leg amputated which began her struggles of keeping up with training and staying in shape as an athlete.
Allyssa suffers from severe muscle impairment throughout her body. She also lacks proprioception do to Chairi II malformation but like many aspects of her life, Allyssa had adapted and is simply used to constantly looking down to see what leg is in front of the other.
She also suffers from epilepsy and has numerous autonomic nervous system issues.

Thinking like a champion to overcome obstacles

The athlete was told she would be lucky if she ever walked unaided again. But being strong-willed and motivated she wasn’t ready to give up on her passion for running and competing. She had surgery in the beginning of August in 2010, and then competed in a triathlon in collegiate nationals 8 months later in 2011.
To Allysa, rare diseases are no handicap. Currently, she trains 7 days a week. She trains 2-3 times a day, weightlifts in the gym 3 days a week, swims once a day, and bike and runs 4-5 days a week- talk about dedication.
Allysa was also featured in ESPN Magazine’s 2016 Body Issue, where athletes are featured nude, exposed and unrestricted.

For more coverage of the Olympics and Paralympics, visithttp://www.raredr.com/conferences/paralympic-and-olympic-games 

Rio Paratriathlon

The 2016 Paratriathlon features the disciplines of swimming (750 m), cycling (20 km) and running (5 km).  To be eligible, athletes must both be ranked on the Qualification List, as well as be internationally classified with either a ‘confirmed’ or ‘review’ sport class status.

We wish our Arizona girl the best of fortune and health while in Rio and may you be as successful as “you” wish! Bring home the Gold!  So proud of you and your accomplishments!
Posted in Uncategorized | Leave a comment

CSF unite@night Mesa Walk, October 1st

https://www.facebook.com/events/1673039349684383/  fundraiser facebook page

Boston Market Fundraising Night for Chiari & Syringomyelia Foundation

Friday, September 16, 4:00 pm to close

3435 S. McClintock Dr. Tempe AZ 85282-5883 

Hosted by Alicia Aguirre, local CSF Walk co-ordinator

                                Help us raise money and enjoy a delicious meal:)

Bring your appetite and a ticket! Event Ticket required for CSF




unite@night Walk Event Information:            

Register at the facebook address OR at http://unitenight.kintera.org/mesa


Saturday 6:00 pm  check-in  Walk-7:30 pm

Walk distance, 1 mi. Wear your own colors!



Posted in 2016, CSF unite@night Walk, Events | Leave a comment

CCWAA16 Arizona


12045608_617740005035077_8811519817740757791_o (1)

Conquer Chiari Walk # 8 Arizona


Make 2016’s Walk Bigger and Better to Conquer Chiari and Syringomyelia!

Posted in 2016, Conquer Chiari Walk, Conquer Chiari Walk-2015, Events | Leave a comment