Westley has been diagnosed with Duchenne Muscular Dystrophy.

Updates

After a little time away from fundraising Dallas and I would like to ask for your help is supporting Parent Project Muscular Dystrophy. PPMD is charitable organization aided at finding a cure for Duchenne Muscular Dystrophy. They invest deeply in treatments for this generation of young men and in research that will benefit future generations. They advocate in Washington, DC and have secured hundreds of millions of dollars in funding. We can’t stop until we find a cure!

As our way of giving back we will be hosting a benefit concert; MD Palooza 2015! We are excited to have booked 3 amazing local bands to rock the day away. We would love for you to come out but if you aren’t free (or local) please consider making a donation to help us END DUCHENNE!

To make a donation and to learn more about the MD Palooza following this link – http://www.parentprojectmd.org/site/TR?fr_id=3920&pg=entry

As a BONUS if we can raise $5,000 by June 13th I will be bravely dying my hair PURPLE! EEK! It’s a good cause so please help me embrace my inner “Barney”!

Please feel free to review the PPMD Annual Report to see how wisely they invest their contributions – http://www.parentprojectmd.org/site/PageServer?pagename=About_financials

We are also in need of Corporate Sponsers so please contact me if you or anyone you know would like to review of sponsorhsip packet.

Thank you all for your continued support and loving prayers. Life is getting harder for my brave hero but he manages to stay strong with the support from you all.

God Speed,
Jessica


Autobots Roll Out

autobots_roll_out__by_usstpac-d61dtm4

We would like to introduce you to Blue, the newest Autobot in the Groseclose family. Blue joins Westley’s Powerchair to make us one big happy handicap accessible family!!!

Many of you have been praying for us to find a way to get this van. Thanks to your prayers God placed some amazing people in our lives.  Donations from big to small came to us allowing a sizable down payment to be made. We could never have afforded to finance this entire van and these generous donations made this possible. It never ceases to amaze me how generous people are to our entire family. Westley is an amazing guy and this van gives us boundless freedom and adventures.

My heart is filled with joy at how our Warriors take care of my baby is ways that I cannot. God is good. All the time.image


Westley’s Wheels – Go Fund Me Campaign

Dallas and I have been encouraged by a few to start a Go Fund Me campaign for Westley. We don’t feel quite worthy but we are lost for options at this point.

We humbly request your help to provide a wheel chair accessible vehicle for Westley. We have been saving and working hard to make this purchase but with the cost of the addition we have come up short and Westley’s new power wheel chair will be here in about 2 weeks.

Without this van Westley will only be able to attend school in his new power chair. It’s medically necessary that he use this chair going forward to provide better air flow, circulation and posture. We’ve picked out a van (the blue one shown in the photo) and hope to be able to surprise Westley soon.

Please pray on this and if you find it in your heart to help no matter the amount we will be forever grateful.

God Speed,

Dallas and Jessica Groseclose

 

Donations can be made here gofundme.com/g3vpew

 


Warrior Update

The eagle has flown the coop

Well not really; he just moved down the hallway. Westley’s Wing is finally done. I do have some touch up painting to do but we went ahead and moved him in. Dallas and I are so grateful to our builder Rick Smith at RBS Inc. and all the amazing contractors that worked in our home over the last few months. So many companies, family and friends made donations to make this room extra special for an extra special little boy. Westley is loving his new “hotel suite” as we have been calling it. Wyatt is surprisingly happy living alone and can’t wait until we can redo the decor to match his personality. We do plan to have an Open House sometime this holiday season so keep a look out for an invite. There are tons of photos that cover start to finish of the project here – https://www.facebook.com/media/set/?set=a.10204168609553083.1073741834.1161708178&type=1&l=1009fcf750

Hot Wheels

Westley’s new wheelchair should be delivered in about 2 weeks! We were told that Medicaid would deny the stander option of the chair upon submission along with a few other things but God was looking out for us and they are covering every option 100%!!!!! For now he will only be able to use it to go to school but once we get an accessible van the sky’s the limit! He even plans to play Power Soccer through the Sportable organization! (PS I know it seems odd to be so happy about your child getting a wheelchair.)

It’s the Final Countdown

13 days from now we will be in (hopefully) sunny Florida! Westley’s make a Wish A Wish trip is 10/29-11/4 and we can’t wait to have this special family time to make lasting memories. We are very thankful for the Make a Wish organization as they are giving our children (and us) a trip we could never provide for them. We are excited to be staying at Give Kids the World during our trip. This place is just as magical as Disney itself. I’ll be posting a few pictures on Facebook during the trip so keep a lookout for the cutest wish kid around.

 

Lastly I would like to ask that everyone send some special prayers out for Wyatt. Duchenne affects more than just Westley. Dallas and I cope but Wyatt is still an adolescent and can’t quite process the situation as well. His OCD is steadily increasing and we believe he’s developed a panic disorder. We as parents are no strangers to the later but it breaks our hearts to see Wyatt struggle with these issues. Sometimes these conditions get in the way of his true self. Thankfully he has a great group of teachers surrounding him and Dallas and I are working on a plan of action to help our not so little guy find peace.

Hope everyone is enjoying the beauty that is Fall.

God Speed,

Jessica


Moving Forward and Mouse Ears

The summer is nearing its end and so is Westley’s Wing. So much progress has been made over the last few months and there is finally an end in sight. For those that follow us on Facebook you have seen the pictures and the blessings that have come our way. For those who stay away from the insanity that is Facebook here is a recap:

I took it upon myself to reach out via email to as many companies as I could to see if they would be willing to donate some “perks” for Westley’s room. Much to my surprise a few companies stepped forward with some AMAZING gifts! First Home Depot called us in to let Westley pick out a touch less faucet for his bathroom. You may not understand the freedom this will provide him but it is HUGE. Home Depot then made a surprise delivery of 5 gallons of Behr paint and a TOUCHLESS toilet!! A few weeks later Costen Flooring contacted us with the news that they would like to donate the Vinyl tiles for Westley’s bathroom and room. (Dallas and I are laying them ourselves so please pray for us! Eek!) He even got to go into their office and pick them out himself. I must say he has great taste. Throughout this entire process friends and practically strangers have reached out with donations, discounts or called in favors for discounts to building and supply companies. The kind and generous nature does not go unnoticed. I never want to be jaded by the blessings God places in our path. This process has made me even more eager to get Westley settled with a home, wheelchair and van so we can pay it forward to many more families like ours.

I would also like to thank Jason Davis for challenging his friends on Facebook to give up a night out to eat or an overpriced coffee and make a donation to help us furnish Westley’s new room. We have raised enough to purchase a comforter set, lamps, night stand and a few wall decorations. It’s been fun for me to watch Westley pick out the items for his room. I’m impressed at how mature he is choosing to decorate his space. (No Sponge Bob or Call of Duty; Whew!) Thank you Jason for opening your heart and your wallet for our son.

Once the room and the remainder of the house (we needed to take out a few interior walls so West can access the entire home) are put in order we plan to invite everyone to an Open House (just like my parents did during the holidays) to show everyone this amazing new space.

 

Until Then…We’re going to DISNEY WORLD!!!!!

A few of you might remember Westley requesting a Pete Nelson tree house from Make-A-Wish but it seems 6 other boys had the same wish and Pete just couldn’t help them all. After Westley heard his tree house wasn’t going to be build by Pete the idea lost its luster and he requested to go with his 2nd wish. So on October 29th the four of us will board an airplane to Florida for 6 nights and 7 days to enjoy all the Disney adventures Westley can think of. We just can’t wait!!!! This is just one more item Dallas and I couldn’t afford to give our children and we are grateful to Make-A-Wish for the everlasting memories sure to be made.

Upcoming Warrior News

  • Westley’s Wheelchair is officially on order
  • Coach to Cure Football game at Liberty University

1st Reports from Honduras

I am so proud of my hubby right now! He is soaking up so much culture and God is touching his heart and showing him things he never imagined.

The 1st journal is out from Honduras!!! The amazing thing is Dallas and his friend Justin are the ones writing it! (Justin did the typing since the keyboard was in Spanish!) Hope you enjoy!!! I am so proud of Dallas!

http://myemail.constantcontact.com/A-Journey-s-Beginning.html?soid=1101947842600&aid=R5hMf2Ak8RA

If you would like to follow the rest of the weeks journals, you can go to http://www.fobf.org/site/notes/ and sign up for their news letter. The name of his team is (Warwick), just check the box next to Warwick and you should receive daily updates on our journey.

 

God Speed,

Jessica


Hot Off the Presses

Last week I announce that their was rumor of a new clinical trial coming soon that would help Westley. I wanted to share the 1st article I have read concerning this trial.

Its real, its happening and its happening in Westley’s lifetime!!!

Jessica

 

http://quest.mda.org/news/dmd-sarepta-submit-new-drug-application-fda-eteplirsen-2014

DMD: Sarepta to Submit New Drug Application to FDA for Eteplirsen in 2014

Drug may be eligible for the agency’s accelerated approval pathway if dystrophin levels are accepted as an endpoint; confirmatory trial also planned for 2014

Article Highlights:
  • Sarepta Therapeutics, developer of eteplirsen to treat Duchenne muscular dystrophy (DMD), was told by the U.S. Food and Drug Administration on July 23, 2013, that the agency would accept a new drug application from Sarepta for eteplirsen, but that it could not commit to reviewing the drug under the agency’s accelerated approval program at this time.
  • The accelerated approval program allows a surrogate endpoint, such as dystrophin levels in muscle biopsy samples, to substitute for an endpoint that reflects true clinical benefit, such as increased life span or improved function.
  • Sarepta says it will conduct a large-scale, confirmatory (phase 3) trial of etepliren in 2014 even if the FDA does not require one.
  • Eteplirsen is designed to treat DMD that is amenable to treatment by skipping exon 51 of the dystrophin gene. Sarepta plans to target exons 44, 45, 53 and 55 next.

 

by Margaret Wahl on July 24, 2013 – 8:48am

In a July 24, 2013, press release and conference call, biotechnology company Sarepta Therapeutics provided an update on the regulatory pathway for eteplirsen, the company’s experimental drug for Duchenne muscular dystrophy (DMD) caused by specific mutations in the dystrophin gene.
DMD: Exon-Skipping Timeline Laboratory development of exon skipping began in the 1990s with significant funding from MDA.

Read more
DNA

Sarepta CEO Chris Garabedian said the company will submit a new drug application (NDA) for eteplirsen to the U.S. Food and Drug Administration (FDA) in the first half of 2014, based on a July 23 meeting the company had with the agency.

However, Sarepta does not yet know whether eteplirsen will be eligible for the FDA’s accelerated approval program.

Accelerated approval allows a drug to be conditionally approved, based on a surrogate endpoint and pending results of a large-scale, confirmatory trial. A surrogate endpoint is a measurement that “stands in” for a clinical benefit and usually can be arrived at faster than a clinical benefit endpoint, such as an increase in life expectancy or improvements in function.

A possible surrogate endpoint for eteplirsen’s benefit is the level of the dystrophin protein present in the muscle biopsy samples of trial participants. (An absence of dystrophin protein is the underlying cause of DMD.)

Sarepta reports that the FDA would not commit to declaring dystrophin an acceptable surrogate endpoint prior to the company’s submission of an NDA for eteplirsen.

“We are very excited about this announcement,” said Jane Larkindale, MDA vice president of research. “By the end of 2014, we could have the first drug specifically for DMD approved by the FDA! This is an important step forward toward that goal. Importantly, although eteplirsen would only treat about 15 percent of boys with DMD, if approved it may open a pathway for more rapid approval of other drugs for DMD, both additional exon-skipping drugs and potentially other types of drugs.”

She added, “MDA’s advocacy team has supported the development of accelerated approval policy through the years, and we will continue to support its use in the development of drugs for our diseases.”

Possible next steps by FDA

After the FDA receives the new drug application from Sarepta, it may:

  • allow the company to market eteplirsen prior to conducting a confirmatory trial, with the stipulation that full approval will be contingent on the outcome of that trial (i.e., allow the company to use the accelerated approval pathway, with dystrophin level as a surrogate endpoint);
  • allow the company to market eteplirsen without conducting any additional trials (i.e., grant full approval for the drug); or
  • require additional information from current and future trials before allowing Sarepta to do any marketing of etepliren.

Phase 3 trial planned for 2014

During the July 24 conference call, Garabedian said Sarepta plans to conduct a large-scale, confirmatory (phase 3) trial of eteplirsen in 2014, regardless of whether the FDA requires such a trial for approval of the drug.

He said the company will need the data from this larger trial as it moves forward with its program of exon-skipping drugs for DMD that target additional dystrophin gene exons, including 44, 45, 53 and 55.

He also said Sarepta is considering enrolling patients with DMD who may benefit from skipping these other exons but would not be expected to benefit from skipping exon 51, to serve as a control group in the confirmatory eteplirsen trial. Normally, the control group would consist of participants who could benefit from skipping exon 51 but would be treated with a placebo.

Garabedian explained that enrolling participants who could not benefit from skipping exon 51 but who could potentially benefit from skipping other exons would:

  • provide a control group for the eteplirsen trial, since these participants would, in effect, be “untreated”;
  • allow all patients with dystrophin mutations amenable to exon-51 skipping to receive eteplirsen, rather than requiring some to receive a placebo; and
  • provide information about patients with mutations amenable to skipping exons 44, 45, 53 or 55, which are future targets for Sarepta’s DMD drug development program.

About eteplirsen

Etepirsen is an exon-skipping drug that targets a part of the dystrophin gene known as exon 51. In about 15 percent of boys with DMD, skipping exon 51 with a drug like eteplirsen theoretically should result in production of functional dystrophin.

For more information

The July 24, 2013, conference call will be available for replay at Events and Presentations on the Sarepta site.

To learn more, also read Exon Skipping in DMD: What Is It and Whom Can It Help? and A Snapshot View: Drisapersen and Eteplirsen, which provides information about the two exon-skipping drugs farthest along in development for Duchenne muscular dystrophy.


Halleluiah!!!

Halleluiah!!! I just got an “insider tip” that a drug trial that covers Westley’s exon mutation SHOULD be approved within 6-12 months!! This is exciting times!!! Tearing up with JOY!!!

This drug trial will tell Westley’s body to skip the mutated exon allowing the DNA strand to start making the dystrophin his body needs. In some way you have all made this possible! All your prayers and fund raising is allowing for more and more effective drug trials to come our way. THANK YOU for being a Warrior!

Please continue to pray for this trial to move forward, for the scientists and all involved and if it is His Will for Westley to participate in this study.

Also keep Dallas in your prayers as he raises money for his trip to Honduras next month and for the safety of his team.

http://www.gofundme.com/3kk5j0

 

God is Good! Today is a day to rejoice!

 

God Speed,

Jessica


Honduras or Bust!

Hello All!

Dallas has been presented with an opportunity to travel to Honduras to aid the sick. With no cure for Westley he has been feeling helpless and I believe God has placed this in front of him to help him fill a void in his heart.

I took a mission trip to Uganda at 17 and it was an experience like no other. I too want Dallas to experience this life changing event to help heal his heart.

We all know trips like this can be expensive but I know God will provide. If you feel it in your heart to give please use GoFundMe below.

http://www.gofundme.com/3kk5j0

 

FROM DALLAS

To my friends and family,

Recently I was invited to join a small group of people for the chance of a lifetime trip.  I have the opportunity to travel to Honduras and assist a Mountain Medical Missions team with treatment and care of children in the area.  The group I am traveling with is called the Friends of Barnabas Foundation Inc. ( http://www.fobf.org) Each year, the Friends of Barnabas Foundation sends eleven Mountain Medical Mission Teams to Honduras.  FOBF staff members select communities in need and travel to clinic sites weeks ahead of the team to notify community leaders of the team’s arrival and their services.  The teams then travel throughout the impoverished areas of central Honduras and serve between 1,500 and 2,000 people in their traveling clinics.
FOBF Mountain Medical Mission Teams provide primary and preventative healthcare.  They set up anti-parasite & Vitamin A stations as well as general medicine, eye, and dental clinics in small schools and churches.  The majority of the patients have never seen a healthcare provider.
Each team is comprised of 4-5 medical professionals, 2-3 Spanish speakers, and the remaining team members have a heart for serving their fellow man.  Teams work side by side with FOBF staff members in Honduras and are a key component to the model of healthcare FOBF strives to promote.
It is my plan to travel with them and assist where I can.  I do not speak Spanish and I have no medical training to provide.  What I do have is a loving heart and strong back.  As you already know, my son Westley suffers from a disease in which there is no cure.  As a father, this leaves me feeling helpless at times.  This presents a chance for me to help others in need.  While this will be a very rewarding experience for the children of Honduras and me, there is a great cost associated with this trip and I’m asking for your help.  The FOBF is a non-profit organization that works solely on volunteers and donations.  In order to make this trip a reality for me, I need to raise just under $2000.  This will pay for my flight, land transportation while there, lodging (Tents), and food.  Some of the money goes to pay for medical treatments and medicine for the children.
It would mean the world to me if you can find it in your heart to help me fund this opportunity of a lifetime.

Sincerely,
Dallas


Muscle Walk 2013

Slaying the Dragon at the 2013 Muscle Walk was great fun!!! The weather kept some of you homebound but those who attended enjoyed the vendors and watching the kids have a blast.

Westley was asked to lead off the Muscle Walk and it was humorous to watch him crash through the finish line tape. (He later crashed into a concrete wall but all that was hurt was his pride.) I couldn’t believe the creativity of the kids when they made their Westley’s Warriors signs to display proudly on the 1 mile walk. We had some amazing little artists on our team.

With your support we raise as a team over $9,000 putting us in 1st place for a second year in a row!!!!! Impressive!!! Westley was awarded a beautiful plaque and a Nook HD. Since he won a Nook last year he decided to return it to the store and place the money in his savings account. Dallas and I were proud of his decision to save the money rather than spend it on something frivolous.

Dallas and I want to thank you for all the support you show our family all year around and during our fundraising efforts. We truly feel we are the luckiest family to be surrounded by you all. This year’s $9,000 is going to make a difference in the fight to cure Duchenne Muscular Dystrophy. I have been reading about some amazing strides in research that make me feel hopeful that there will be some help for Westley in his lifetime. Thank you for slaying this dragon along with us!

We don’t know how STRONG we are until being STONG is the only choice we have!

God Speed, Jessica, Dallas, Westley and Wyatt

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3 Days and Counting

There is less than 3 days left to our favorite MDA event of the year!!!

Join us for the 2013 MDA Central Virginia Muscle Walk – this Sunday, March 24th at Meadow Event Park – State Fairgrounds!! Lot’s of fun stuff including dance teams, cheerleaders, marching bands, mascots, raffles, DJ tunes by Jason Paige Celebrity Radio DJ’s & much, much more!!

(Rain or shine!! The event will be indoors if the weather is bad.)

It’s not to late to make a donation to help change the lives of so many!

http://www2.mda.org/site/TR/Walk/22-B1-379-RichmondDistrict?team_id=12202&pg=team&fr_id=4439

 

We hope to see you all on Sunday!

If you ordered T-shirts I will have them at the event!

 

Jessica


What’s Happening in DMD Research

Do you know what happened in the year 2001?  The MD Care Act was first passed.  At that time there was only $17 million from the NIH for DMD, no drugs for DMD in the pipeline, no guidance for care, no patient registries and the average life span for DMD was in the late teens.

Fast forward to today:  the NIH is now funding $75 million in DMD research, there are 9 new DMD drugs in trial and 10-12 others in preclinical development, care guidelines have been established and shared worldwide, there is an International registry for DMD and amazingly the average life span for DMD has INCREASED BY 10 YEARS!

In early February the MDA announced they will be giving 13.6 million dollars to grants.  More than 40 new grants will support new drug development, greater understanding of disease processes and more efficient diagnosis of neuromuscular diseases.

Please help us to keep this pace of research by making a donation that is sure to bring joy to so many faces!

A cure is possible with your help! Click here to help us find a cure!

I am no scientist but I am going to do my best to explain a few of these trails and what they mean for Westley and others like him.

Jessica

Just 27 more days until the 2013 MDA Muscle Walk

Event Date: March 24, 2013 Event Time: 1pm – 4pm

Event Location: Meadow Event Park (State Fair Grounds)


Show the Love this Valentines Day!

In Honor of KINDNESS WEEK please help us raise our 15k goal to support Muscular Dystrophy research!!!

Please visit our Muscle Walk site to show your LOVE by joining our fight and making a secure donation to SLAY Muscular Dystrophy!!!

http://www2.mda.org/site/TR/Walk/22-B1-379-RichmondDistrict?team_id=12202&pg=team&fr_id=4439

 

Our family would greatly appreciate your help!

 


Denial is a River in Egypt

You may find this blog much different than anything you have ever read from me but I believe telling our ENTIRE story is therapy and has the potential to help others out there. So here I am about to open my soul to all our Warriors…

As some of you may know DMD is passed along to boys 60% of the time from the mother and 40% of the time it is a genetic mutation. As far back as my family can recall there have been no other cases of DMD on my mother’s side of the family and so I had convinced myself upon Westley’s diagnosis that I did not pass this nasty disease onto my sweet Westley but I cannot allow myself to be in denial any longer.

I am showing symptoms (minor as they are) that I am a carrier of DMD. In most carriers no sign or symptoms of the disease ever rear their ugly head but in doing research I have found that some DMD carriers can manifest symptoms. After research I evaluated my “issues”; arm weakness that I chalked up to years of working at a computer but hasn’t gotten any better after exercise and not working at a desk all day for almost a year, major calf pain during and after work outs even though I stretch properly, and shortness of breath. My symptoms are minor compared to some other manifesting carriers but I need to straighten this out as carriers have higher risks of heart disease. I have begun the process of testing to verify my intuition. My initial blood work came back healthy but I will have to have a $6,000 genetic test in March to get the true answers.

There are so many emotions right now; depression, anxiety, fears for my future health along with Westley’s health, GUILT… the list goes on. Two weeks ago I had to MAKE myself get out of the bed and off the couch. The depression and anxiety attacks fogging my every thing sent me to a place where I now am relying on medication to clear the haze that enveloped me. I am not ashamed to admit I needed them and happy to report the fog is gone and I can breathe and enjoy life and my family again. My rational self knows that this is not my fault. I would never have chosen to make Westley go through this. I do believe we were chosen by God to be this child’s parents and were given the tools to raise him well and make a difference in this world.

To those I confided in early on Thank You for your love, prayers and kind words. They are truly helping me find my path again. Through it all Dallas has been my Rock. I thank God for him everyday.

God Speed,

Jessica

 


New Year; New Website!!!!

 Welcome to Westley’s DRAGON Warriors!!!!!!

My blog was hacked and we had to start over but the new site looks AMAZING! My Uncle Todd saved my posts (Thank God!) but my user contacts couldn’t be restored. I will be adding you all back into the site over the next few days so expect an email from me with your Username and Password. (Feel free to register yourself at WestleysWarriors.com)

 

NOW FOR THE FUN STUFF…

We are gearing up for the 2013 MDA Muscle Walk!

Come help us SLAY Muscular Dystrophy!!!

Please join our team and make an donation!!!

http://www2.mda.org/site/TR/Walk/22-B1-379-RichmondDistrict?team_id=12202&pg=team&fr_id=4439

WE have already raised $3,166! What a great way to start off the year!

For every dollar we raise, 100% goes directly to support research for Duchenne Muscular Dystrophy.

Join us for the 2013 MDA Muscle Walk

Event Date: March 24, 2013 Event Time: 1pm – 4pm

Event Location: Meadow Event Park (State Fair Grounds)

 

Coming Soon

* the coolest Warrior t-shirts to date*

*Blog – DMD Research Advances*  


Westley’s Dragon Warriors

Westley’s DRAGON Warriors

Help us SLAY Muscular Dystrophy!!!

 Save the date, join the team or make an early donation!!!

http://www2.mda.org/site/TR/Walk/22-B1-379-RichmondDistrict?team_id=12202&pg=team&fr_id=4439

I would like to say a special Thank You to my Uncle, Scott Carpenter for our 1st donation of $656. This donation was made possible from the sales of his book “Little Pepper Muffin”.

What a great way to start off!

For every dollar we raise, 100% goes directly to support research

for Duchenne Muscular Dystrophy

 

Join us for the 2013 MDA Muscle Walk

Event Date: March 24, 2013 Event Time: 1pm – 4pm

Event Location: Meadow Event Park (State Fair Grounds)


MDA Show of Strength Clips

Thank you to those who tuned into the 2012 MDA Show of Strength. The format was much different from years past but our family really enjoyed it. About 10pm Westley was literally holding his eyes open. We told him he could go to sleep but he didn’t want to miss any of it. 🙂 After a snack he managed to watch the entire thing and fell asleep to Carole King’s send off of “You’ve Got a Friend”.  It was a wonderful evening for us all.

 

 

 

 

 

 

 

I hope you all were touched just as we were by the inspiring families and the artists that donated their time for the MDA.

You those who missed it or are not local Dallas was able to video our local clips and I uploaded them to our YouTube channel. Hope you all enjoy!

http://www.youtube.com/user/westleyswarriors?feature=results_main

 

God Speed,

Jessica


Mark Your Calendars!!!

I hope you will all tune in to the MDA Show of Strength this Sunday, Sept 2nd, 8/7c!!!

The format is new but promises to be amazing!!!! Our family should be making an appearance on our local channel around 10:37pm.

http://mdashowofstrength.com/

 

Also the 2nd annual MDAPalooza is coming up October 6th!!!!

We have been granted a wonderful opportunity to join forces with Awful Arthurs in Midlothian and couldn’t pass on the chance to extend MDA PALOOZA to a wider audience.  We will have rocking bands, vendors and a huge Oyster Fest!!! Join us October 6th, 12-6pm @ Awful Arthurs in Midlothian 1300 Sycamore Square, Midlothian, Virginia 23113

Contact us at mdapalooza@aol.com with questions, vendor spots, etc.

https://www.facebook.com/messages/1240525297#!/mda.palooza


Little Pepper Muffin

My Uncle Scott has written an uplifting children’s book entitled “Little Pepper Muffin” about a young girl with Muscular Dystrophy and has dedicated the book to Westley. He is also very generously donating 50% of the profits to Muscular Dystrophy research! I hope you all will follow the link below and purchase one (or even a few books to give as gifts). At $8.99 it really is a great little gift that comes with a positive life lesson for everyone who reads it.

 

 

Pepper Muffin can’t walk very well. She has a disease that makes her have to use braces on her legs and crutches on her arms. But she never lets that stop her from pursuing her dreams! Little Pepper Muffin and her father both join the competition to see who will bake the muffins for the mayor’s annual Potato-and-Vegetable-Soup Dinner Extravaganza! Will Pepper Muffin’s pepper muffins take the prize?

 

To purchase go to – http://www.tatepublishing.com/bookstore/book.php?w=978-1-62024-084-7

 


MDA Muscle Walk -Channel 8 interview

I want to thank everyone who helped Westley’s Warriors surpass our goal at this year’s MDA Muscle Walk. We raised a phenomenal $15,642 and the total is still rising.  J You all made one little boy feel very loved. Thank you all from the bottom of my heart for your kindness and friendships.

 

Channel 8 covered the event and both Westley and I made the clip –

http://www.wric.com/global/Category.asp?c=190525&autoStart=true&topVideoCatNo=default&clipId=6810857


Huge Success

What a beautiful snowy morning here in Powhatan, VA. You would never know that yesterday’s Muscle Walk weather was in the 50’s and partly sunny. We had about 55 Warriors show up in white, pink and orange Ninja shirts. The colors looked great together and everyone loved the ninjas. Who knew!

The children had a blast playing in the gym, making posters and dancing to the music.  Westley and I were even interviewed for the local evening news. A huge Thank You to April Ford for helping me run our registration table. I couldn’t have done it without her! In the end the event raised over $120, 000 all for research!!!! We Warriors raised a phenomenal $15, 342 putting us in 1st place!!!!! (and a few hundred more to come) For all our efforts Westley won a NOOK Tablet!!!! He is now enjoying a Netflix moving with Wyatt while we wait to see if school is cancelled. As wonderful as the Nook is so many have won here today; the money raised will help to find a cure for Westley and many others. Everyone wins! He’s only 8 but even Westley gets that our 15k means he is very loved and folks want him healed of this muscle wasting disease.

Dallas and I want to say how amazing you all are for everything you do for Westley and our family. We say it all the time; we don’t know where we would be without the love and support of the MDA and our phenomenal warriors behind us. I swell with tears and pride to think of all the love we receive from you all. (Thank God for waterproof mascara!) Please know we love you all back and appreciate your generosity. You all helped make a little boys feel extremely loved yesterday.

I hope you all enjoy this beautiful white day ahead of us!

 

Westley's Warriors posted signed by all our Warriors

 

God Speed,
Jessica


Muscle Walk – Sunday 1pm

Sunday’s weather couldn’t be better so come out and enjoy it with Westley’s Warriors!

Muscle Walk 2012

March 4th 1-4pm @ University of Richmond Weinstein Gym

Please arrive at 1pm so I can register our team

Come join this fantastic family get together to celebrate fundraising efforts made by our MDA families.

Look for the Westley’s Warriors table set up outdoors. You can sign your walk waivers, pick up Warrior and event t-shirts and mingle with man himself (if I can keep him still long enough).

Donate to find a cure http://www2.mda.org/site/TR/Walk/22-B1-379-RichmondDistrict?px=1004571&pg=personal&fr_id=1408


Muscle Walk 2012 – THIS Sunday!!!!

I cant believe its here already!!!!!!

Please Join Westley’s Warriors in our Fight

Muscle Walk 2012

March 4th 1-4pm @ University of Richmond Weinstein Gym

Come join this fantastic family get together

to celebrate fundraising efforts made by our MDA families.

 

We will have DJ: Jason Paige from Celebrity Radio DJ’s,

a drum line, cheerleaders, activities such as sign making, temporary tattoos, and more!

Last year there were 800 in attendance to support the amazing families and all the hard work they do to bring awareness to find a cure.

 

Westley’s Warriors Goal –               $15,000

Funds Raised as of 2/29/2012!!!! – AN AMAZING $13,632!!!!!!!

We happen to be in 1st place in funds raised so far. 🙂 Westley is so excited!!

We have 4 days to surpass our 15k from last year. Can we do it! Yes; with your help!

Join our teamhttp://www2.mda.org/site/TR/Walk/22-B1-379-RichmondDistrict?team_id=4368&pg=team&fr_id=1408

Donate to find a curehttp://www2.mda.org/site/TR/Walk/22-B1-379-RichmondDistrict?px=1004571&pg=personal&fr_id=1408

 

I am looking forward to seeing all of you March 4th!!!!

Jessica


Please Join Westley’s Warriors in our Fight

Please Join Westley’s Warriors in our Fight

Muscle Walk 2012

March 4th 1-4pm @ University of Richmond Weinstein Gym

Come join this fantastic family get together

to celebrate fundraising efforts made by our MDA families.

 

We will have DJ: Jason Paige from Celebrity Radio DJ’s,

a drum line, cheerleaders, activities such as sign making, temporary tattoos, and more!

Last year there were 800 in attendance to support the amazing families and all the hard work they do to bring awareness to find a cure.

 

Westley’s Warriors Goal –               $15,000

Funds Raised as of 2/22/2012!!!! – $10,334

We have 10 days to surpass our 15k from last year. Can we do it! Yes; with your help!

Join our teamhttp://www2.mda.org/site/TR/Walk/22-B1-379-RichmondDistrict?team_id=4368&pg=team&fr_id=1408

Donate to find a curehttp://www2.mda.org/site/TR/Walk/22-B1-379-RichmondDistrict?px=1004571&pg=personal&fr_id=1408

 

I am looking forward to seeing all of you March 4th!!!!

 

Jessica