Always for the Children

JFF Blog

Wed, Oct 17, 2012

Flying the Puppies

Category: General  

The Joshua Frase Foundation
alison and nibs

From Mandy Lockard:


"Fittingly, a XLMTM (caninie) carrier named Elvira born at Halloween not only tricked us, but she has given us a great treat...
Elvirawas recently bred to "Rocky", our XLMTM affected dog who received gene therapy. Rocky has amazed everyone by not only surviving beyond the expected age of 18 weeks, but by surviving to over a year old, due to the gene therapy we have developed, supported by your donations...
From this breeding, Elvira gave us a gift of five pups: one male and four females. To our surprise, Elvira tricked us by passing on an affected X chromosome to all of the pups in the litter... Then came our treat: Against the odds...this process has created the first known XLMTM Affected Female Dogs.  These results are nothing short of miraculous. 
With the realization of these female affected dogs, we have potentially more than doubled the speed of the research." 


THE ASK: What we need is the donation of your American Express points that we can use to 'buy' flights for 4 members of our team to fly these dogs to Seattle.  These pups are too fragile and valuable to risk shipping in the baggage compartment, so we will personally handle these pups on the plane.  You can transfer your american express points, or if you choose to give a monetary donation through our website, just put 'dog colony' in the memo and we will apply it directly to this project.  We will be transporting these pups on March 3rd, so we need your points or donation as soon as you are able to coordinate.  

Alison Rockett Frase | PO Box 2041 Ponte Vedra, Fl 32004 | 904-607-1358


Sat, Sep 01, 2012

First Annual Benjamin Earp Run

Category: General  

The Joshua Frase Foundation
Dear Friends and Families,
We wanted to share what one of our families is doing this coming October. The following is copied from their Facebook event page. What this couple is doing is incredible for our community! Enjoy!  - Alison Frase
Please join Allison and I for the inaugural "Run For Benjamin" 5k Run / 1 Mile walk in honor of Benjamin Earp on Saturday, October 13th, 2012 in Newtown Square, PA at 9 AM!


To sign up for the race or the walk, please go to and click "find a run" under the "runners" section. In the search box just type "Benjamin" and click search. You can then register online via the link. The race fee is $25, and all proceeds will go to the Joshua Frase Foundation ( see more info below ). Children 12... and under are free - no registration required! Please invite any friends who may be interested!


As many of you know, on February 13, 2012, our son Benjamin David Earp passed away on his 1 month birthday due to complications from a disease called X-Linked Myotubular Myopathy. He is dearly missed by all who knew and loved him for his short time with us. The company I work for, SAP, has graciously agreed to host this run on their campus in Newtown Square, PA. There is a 5k run and also a 1 mile walk option. The 5k course is comprised of 3 one mile loops around SAP's campus, and the 1 mile walk is one loop of the same course. For a course map click here.


There will be prizes for the top 2 male and female finishers and Run For Benjamin t-shirts will be available for the first 500 to register!


All proceeds from this run will go to the Joshua Frase Foundation. The Joshua Frase Foundation supports ongoing research to find a cure or treatment for Myotubular Myopathy, and also supports families who are affected by congenital myopathies. For more information on the Joshua Frase Foundation, please visit their website.


You can help support this very worthy cause in the following ways:


-Registering for the Run or Walk


-If you cannot attend, you can donate directly to the Joshua Frase Foundation. Please make sure to note the donation is a tribute to Benjamin Earp. Also, if you are an SAP Employee, please consider using the SAP Matching Program.


Allison and I would be so thrilled to see you there as we remember Benjamin, celebrate his life, laugh with friends, and raise funds to help other children with this disease. Thank you!!!!




Brian and Allison


Benjamin Earp

Alison Rockett Frase | PO Box 2041 Ponte Vedra, Fl 32004 | 904-607-1358


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